systematic review masters’ and ll.d. dissertations on ... · masters’ and ll.d. dissertations...

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SystematicReview

Masters’andLL.D.DissertationsonDisabilityinMalta

Writtenby:

DrLaraBezzina

onbehalfoftheDeparmentofDisabilityStudies,FacultyforSocialWellbeingattheUniversityofMalta

andtheCommissionontheRightsofPersonswithDisability

November2018

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TableofContents

ContentsSystematicReview..................................................................................................................................1

Masters’andLL.D.DissertationsonDisabilityinMalta.........................................................................1

TableofContents...............................................................................................................................2

ListofAbbreviations...........................................................................................................................4

Acknowledgements............................................................................................................................5

INTRODUCTION......................................................................................................................................6

Methodology......................................................................................................................................6

IdentificationofDissertations........................................................................................................6

SelectionofDissertations...............................................................................................................7

ReviewofDissertations..................................................................................................................7

ReviewOutline...............................................................................................................................8

Limitations......................................................................................................................................8

REVIEW...................................................................................................................................................9

HumanRightsandLegalAspects............................................................................................................9

DisabilityMovement..........................................................................................................................9

DisabilityRights&Non-Discrimination..............................................................................................9

‘LegalInsanity’andLegalCapacity...................................................................................................14

Legal‘Insanity’..............................................................................................................................14

LegalCapacity...............................................................................................................................16

BioethicsandGenetics.....................................................................................................................18

LifeAreas..............................................................................................................................................21

Education.........................................................................................................................................21

StudentswithDyslexia.................................................................................................................21

StudentswithADHD.....................................................................................................................21

StudentswithSEBD......................................................................................................................22

StudentswithSevereDisability....................................................................................................26

StudentswithHighAbility............................................................................................................26

PerceptionsandAttitudestowardsStudentswithDisability.......................................................27

TheRoleoftheINCO....................................................................................................................28

TheTransitiontoSecondaryEducation........................................................................................29

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TheTransitiontoPost-SecondaryLifeandBeyond......................................................................29

TheUniversityExperience............................................................................................................31

Employment.....................................................................................................................................31

InformationandComputer-BasedTechnology................................................................................35

Leisure,CultureandSport................................................................................................................37

LeisureandCulture......................................................................................................................37

Sport.............................................................................................................................................38

IntimateRelationshipsandSexuality...............................................................................................39

Services................................................................................................................................................41

CommunityServices.........................................................................................................................41

ResidentialSettings..........................................................................................................................41

PsychologicalandCounsellingServices............................................................................................43

StagesofLife........................................................................................................................................46

Children............................................................................................................................................46

Youth................................................................................................................................................47

Families............................................................................................................................................48

FamiliesandCouples....................................................................................................................48

Parents.........................................................................................................................................50

Siblings.........................................................................................................................................52

Impairments.........................................................................................................................................54

TheDeafCommunity........................................................................................................................54

PersonswithIntellectualDisability..................................................................................................54

PersonswithMentalHealthIssues..................................................................................................55

MentalHealthandHospitalisation...............................................................................................57

CONCLUSION........................................................................................................................................59

ListofDissertations..............................................................................................................................60

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ListofAbbreviationsAAC AugmentativeandAlternativeCommunicationADHD AttentionDeficitHyperactivityDisorderAT AssistiveTechnologyCRPD CommissionfortheRightsofPersonswithDisabilityECHR EuropeanConventionfortheProtectionofHumanRightsandFundamentalFreedomsEOA EqualOpportunities(PersonswithDisability)ActEPA EnduringPowerofAttorneyEU EuropeanUnionFITA FoundationforInformationTechnologyAccesibilityHR HumanResourcesIBL Inquiry-BasedLearningICT InformationCommunicationsTechnologyIEN IndividualEducationalNeedINCO InclusionCoordinatorITS InstituteofTourismStudiesLSE LearningSupportEducatorLSZ LearningSupportZoneMCAST MaltaCollegeofArts,Science&TechnologyMCH MountCarmelHospitalMS MultipleSclerosisNGO Non-GovernmentalOrganisationPSD PersonalandSocialDevelopmentSEBD Social,EmotionalandBehaviouralDifficultiesUN UnitedNationsUNCRPD UnitedNationsConventionontheRightsofPersonswithDisabilitiesUoM UniversityofMaltaVR VirtualReality

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AcknowledgementsThis review would not have been possible without the help and support of many people whodedicatedtheirtimeinordertomakethishappen.Firstandforemost,mythanksgototheacademicandadministrativestaffat theDepartmentofDisabilityStudiesat theFaculty forSocialWellbeing(at the University of Malta), namely: Dr Anne-Marie Callus who, with her endless patience andguidance, enabled this review;MsDorianne Cortis,whowas always ready to helpme access thenecessary dissertations despite her busy schedule; and Prof Andrew Azzopardi for his support.FurtherthanksgotothestaffattheDepartmentofCounselling;aswellasthoseattheCommissionfor the Rights of People with Disability for their friendly welcome and support in accessing thedissertationsattheWenzuDalliResourceCentre.Finally,Iwouldliketoextendmythankstothosefriendsandpersonalcontactswhohelpedmeaccessotherwiseinaccessibledissertations;aswellasfriendsandfamilywhosupportedmeinmanydifferentwaysthroughout.

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INTRODUCTION

This systematic research review identifies and looks at dissertations relating to disability inMalta

that were produced in fulfillment (partial or otherwise) of Masters’ degrees and LL.D (Doctor of

Laws) from 2000 to the beginning of 2018 at the University of Malta (UoM) and in foreign

universities.Sincemostof thesedissertationsareunpublished, it ishoped that this reviewwillbe

useful in bringing to the fore research findings ondisability inMalta. The aimof this review is to

provideaclearerpictureof:

• how to better serve people with disability in Malta, through the identification of the

challenges and support which different groups of disabled people in Malta encounter in

theirdailylives;

• whichareas(ondisabilityissuesinMalta)havebeenmoreresearchedandthoselessso;and

• whichareas,relevanttodisabledpeople’slivesinMalta,needtobefurtherexplored.

Methodology

IdentificationofDissertations

ThedissertationstobereviewedwereidentifiedthroughsearchingontheUoMLibraryportalHyDi,

the UoM Library’s online catalogue, and the UoM Institutional Repository, OAR@UM. The latter

included searches from the following Faculties andCentres: Centre for Labour Studies, Centre for

EntrepreneurshipandBusinessIncubation,CentreforEnvironmentalEducation&Research,Centre

forResilienceandSocio-EmotionalHealth,Centre for LiberalArts&Sciences,Euro-Mediterranean

Centre for Educational Research, European Centre for Gerontology, Faculty for Social Wellbeing,

Faculty fortheBuiltEnvironment,FacultyofArts,FacultyofEducation,FacultyofHealthSciences,

Faculty of Laws, Faculty of Media and Knowledge Sciences, Faculty of Theology, Institute for

European Studies, Institute for Tourism, Travel & Culture, Insitute of Linguistics and Language

Technology,andSchoolofPerformingArts.

Searches were conducted using key search terms including ‘masters’ ‘dissertations’,

‘disability’,‘disabledpeople’,‘peoplewithdisability’and‘specialneeds’(thelatterwasusedinorder

toensuretheidentificationofolderdissertations).Otherdissertations,includingonescarriedoutat

foreignuniveristies,wereidentifiedthroughtheWenzuDalliResourceCentreattheCommissionfor

theRightsofPersonswithDisability(CRPD)premises;theonlineDisabilityArchiveattheCentrefor

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Disability Studies at the University of Leeds; the academic staff at the Department of Disability

StudiesattheUoM;internetsearches;personalcontacts;andreferencesindissertationsreviewed.

SelectionofDissertations

Thedissertationsreviewedwerethosewhichweresubmittedfromtheyear2000onwards.This is

theyeartheEqualOpportunitiesAct1cameintoforce,sincefindingsearlierthanthisdatewouldnot

beas relevant to theaimof thepresent review.Theenddatewas set to the startof2018, since

dissertationssubmittedduringthatperiodwerealreadyavailableatthestartofthisreview.

Thedissertations selectedwere thosewhicharebasedon the socialmodelofdisabilityor

related ones, such as the human rights model, the biopsychosocial model, and the affirmation

model.Forthisreason,thosedissertationswhichresearchthemedicalaspectsofdisabilitywerenot

included.Furthermore,thedissertationsrevieweddealwiththetopicofdisabilityinMaltaandare

ones which deal with disability as a main topic, not as a by-product of the main topic of the

dissertation.

ReviewofDissertations

Atotalof93dissertationswerereviewed.Themethodemployedinreviewingthedissertationswas

thefollowing.Theabstractwasreadfirst,andthesalientpointsofthedissertationwereidentified.

Subsequently, those points were elaborated on through the relevant parts of the dissertation: in

socialsciencedissertationsthesepartsaremainlytheintroduction,results,analysisandconclusions.

In other dissertations such as legal ones, which are not always divided thus, themost important

chapterswerelookedat,or,whererelevant,thosepartswhichdealwiththeMaltesecontext.

Thereviewinthenextchaptergivesanindicationofwhateachdissertationentails,givingas

wholisticoverviewaspossible.Somedissertationsaredelvedintomorethanothersduetovarious

reasons,including:becausetheyexploreoriginaltopics(thatis,topicswhichwerenotresearchedby

other students) or becausemore detail is needed in order to explain the topic. Otherswere not

exploredingreatdetailduetoreasonssuchasthefactthatnotallthedissertationwouldbeon/

relevanttotheMaltesecontext/disability.

This review does not cover all the parts of each dissertation covered. In reviewing the

dissertations,dueconsiderationwasgiven to the importanceand relevanceof theoutcomeswith

regards toCRPD’sworkwithdisabledpeople inMalta. Furthermore, importancewasgiven to the

most significant findings of the dissertation, rather than to topics which are just touched upon.

Emphasiswasputontherecommendationsputforwardbyauthors,inordertobringoutthemore

1Chapter413oftheLawsofMalta:EqualOpportunities(Personswithdisability)Act(2000).

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practicalaspectsofthedissertationsandthuslaythebasisforfutureresearchandaction.Wherethe

recommendations have since been implemented, this was noted in the review itself in the

‘Reviewer’sNote’.Wheresignificanttotheresultsofthedissertation,themethodologyandsample

sizewerealsomentioned.

ReviewOutlineThe review in the subsequent chapter is divided by theme, with a section for each theme (for

example education, employment, etc.) which is covered by the dissertations reviewed. Where

necessary,thesectionisthendividedintosub-sections.Someofthesections,ratherthanbytheme,

relatetoaspecificimpairment,duetothefactthattherearedissertationswhollydedicatedtothat

specificimpairment.

Evidently, somedissertationscovermore thanone theme/ impairment.Where this is the

case,cross-referenceswereutilised inorder to refer the reader to the relevantsectionwhere the

sametheme/ impairment isdiscussed.Nonetheless,eachsectionandsub-sectionisastand-alone

one in the sense that it can be read and understood on its own.Where there ismore than one

authorwiththesamesurnamewhosubmittedadissertationinthesameyear,thenameinitialwas

usedinthetextsoastodifferentiatebetweenauthors.

Limitations

While carewas taken to identify all the relevant dissertations, it is possible that theUoM search

enginesmentionedabovemightnothaveshownallresults.However,theuseofbothsearchengines

and other sources helped to mitigate this possible limitation. Since dissertations submitted to

foreign universitieswere partly identified through enquiries, however, some of thesemight have

beenmissed.

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REVIEW

HumanRightsandLegalAspects

DisabilityMovement

ThelackofadisabilitymovementinMaltaisexploredbyCardona(2007)andAzzopardi(2000).Both

authors identify the reasons for this absence and cite, among others, factors such as the large

numberofdisabilityorganisationscontrolledbynon-disabledpeople,aswellasthefragmentation

amongst (and, as Azzopardi notes, sometimes within) disability groups into impairment-specific

ones.Azzopardialsonotesthefactthatdisabledpeopledonotfeeladequatelypreparedforproper

activism, one of the reasons being the over-involvement of parents. Furthermore, both authors

bring to the fore thecharity-basedmodelapproach todisability inMaltawhichmanifests itself in

sucheventsascampaignstoraisefundswhichoftendemeanandhumiliatedisabledpeople.These

perceptions,Cardonanotes,remain largelyunchallengedduetothe lackofadisabilitymovement.

Ultimately, Azzopardi concludes that the climate is ripe for the setting up of a coalition of

organisationsthatcaneffectivelycombattheoppressionofdisabledpople;whileCardona,writing

sevenyears later,observestheemergenceoftheopposingoftraditionalviewsofdisabledpeople,

partlythroughhis(no-longerexisiting)MalteseCouncilofDisabledPersons,thefirstMaltesecross-

impairment organisation adopting the social model of disability. Unfortunately, the disability

movement inMalta seems tobe still non-existentat the timeofwriting this review in2018,with

someofthereasonscitedbybothauthorsstillbeinginexistence.Thusrecommendationsmadeby

Azzopardi, suchas theunionisingby federating theexistingorganisations, still stand.AsAzzopardi

himself noted, while there is a Federation of Organisations Persons with Disability2, there were

respondentswhodidnotunderstanditsroleorresponsibility.Furthermore,Cardonanotestheneed

formoreempoweringandtransformativeemancipatoryresearchinordertomovetowardsasociety

inwhichdisabledpeople’squalityoflifeis,inhisownwords,“justlikeanybodyelse’s”.

DisabilityRights&Non-Discrimination

Pulis(2001)looksattheEqualOpportunities(PersonswithDisability)Actof2000(EOA)3andgivesa

historicaloverviewandevaluationofthesituationofdisabledpeoplepriortothisAct,includingkey

legislations and milestones relating to disability. The author emphasises that full inclusion and

integrationofdisabledpeoplewouldbebenficialtoall:personswithdisabilitieswouldachievetheir

2https://maltafederationoforganisationspersonswithdisability.wordpress.com3Chapter413oftheLawsofMalta:EqualOpportunities(PersonswithDisability)Act(2000).Availableat:http://www.justiceservices.gov.mt/DownloadDocument.aspx?app=lom&itemid=8879&l=1

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duerights,governmentswouldbesubstantiallyrelievedfromtheburdenofsocialbenefits,andthe

taxpayers would be alleviated from contributing for such purposes. Meanwhile, Borg (2011) and

Cutajar (2006) – in attempting to establish whether the rights of persons with disabilities are

effectivelyprotectedthroughthelegalsysteminMaltaasstatedintheconventionsandlegislations

oftheUnitedNations(UN),theEuropeanUnion(EU),theCouncilofEuropeandnationallegislation

– state thatwhile the rights of personswithdisabilities arebeingprotected, adequateprotection

againstdiscriminationtowardsdisabledpeopleshouldbeprovidedintheMalteseconstitution;and

that hadMalta adhered to the European Social Charter4 protocol5,Maltese citizens could benefit

fromthecollectivecomplaintssystemavailableinthisCharter.However,Pulis,BorgandCutajarall

suggest that legislation on its own is not enough. Pulis observes that formal equality, such as

enactinglawswhichimposequotasonemployers(whichisdiscussedindepthinthe‘Employment’

sectionbelow)donotwork:what isneeded is ratherpositiveaction inorder todoawaywiththe

ingrainedmentality of discrmination and exclusion by society towards disabled people. Borg also

states that most of the laws pertaining to persons with disabilities fail to take into account the

diversity between disabled persons, who need different resources depending on their disability.

Furthermore, sheargues that itwouldbebetter if theCommission for theRightsofPersonswith

Disabilities(CRPD)6wereentrustedsolelywitheithertheroleofimplementation(ofpolicies)orthat

ofmonitoring(their implementation): inordertobettersafeguardrights, itwouldbebesttohave

two different entities. Borg also suggests the implementation of other aspects outside the legal

system,including:

• betterawarenessoftheserights;

• thecollectionofdataonpersonswithdisability;and

• a network between various disability non-governmental organisations (NGOs) and

committeesthatwillensurethebetterimplementationoftheserights.

Ultimately, rights are of little value if they are not accessible: as Borg and Cutajar both observe,

persons with disability face barriers in access to courts, since they are at times precluded from

personallyappearingatcourtbecauseofpovertyandphysicaldisability (anobservationechoed in

the‘Employment’sectionbelow).AsBorgpointsout,theCRPDcanonlybringanactionbeforethe

courtonceithasbeenconcludedthatnoamicablesettlement,foraparticularcomplaint,hasbeen

achieved.At timescourts fail to take intoconsideration theneedsand impairmentsof theperson

4TreatyNo.035oftheCouncilofEurope:EuropeanSocialCharter(1961).Availableat:https://www.coe.int/en/web/conventions/full-list/-/conventions/treaty/0355TreatyNo.158oftheCouncilofEurope:AdditionalProtocoltotheEuropeanSocialCharterProvidingforaSystemofCollectiveComplaints.Availableat:https://www.coe.int/en/web/conventions/full-list/-/conventions/treaty/1586http://crpd.org.mt.FormerlyknownasKummisjoniNazzjonaliPersunib’Diżabilta’(KNPD).

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withdisabilityandtheeffectithasonhis/herlife,aswasseeninthepartialreversal,bytheCourtof

Appeal, of the decision taken by the Court of First Instance on the Case Il-Kummisjoni Nazzjonali

Persuni b’Diżabilta’ v. Michele Peresso Limited (2007). Borg states that courts should strive to

interpretandapply legislation inamanner thatbetterprotects the rightsofdisabledpeople (and

not give rulings based on the medical model of disability); and that the general public is also

persuadedoftheworthoflegislationprotectingdisabledpeople’srights.

While Pulis, Borg and Cutajar take a wide approach to the legislative frameworks protecting

disabledpeople’srights,Grech(2017),Busuttil(2017)andCamilleri(2012)focusmorespecificallyon

theUnitedNationsConventionon theRightsofPersonswithDisabilities (UNCRPD)7, theEU’sand

Malta’sratification–andlackofcompliancewithcertainarticles–oftheConventionanditsoptional

protocol8, and the subsequent amendments to the EOA. The authors provide a number of

recommendations aimed at ensuring the full inclusion of disabled people in Maltese society,

including:

• theearlyandfullinvolvementofdisabledpeopleinpolicymaking;

• reasonableaccommodationtoensuredisabledpeople’sfullparticipationinallareasoflife;

• thecreationofasingleNationalHumanRightsInstitution9;

• theenactmentof theBill10whichenablestheprovisionsof theUNCRPDtobeenforceable

aspartoftheLawsofMalta;

• theinclusionofdisabilityasanareawherediscriminationisunconstitutional;

• ensuringequalrighttoworkfordisabledpersons;

• ensuring that when criminally charged persons with disability are to be informed in an

accessibleformat;

• ensuringthatwhenvoting,personswithdisabilitycanbeassistedbyatrustedfriend;and

• thedevelopmentofmoreeffectivedisabilityawarenessraisingcampaigns.

OtherrecommendationsspecifictotheEOAinclude:

7UnitedNationsConventionontheRightsofPersonswithDisabilities(2006).Availableat:https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html8OptionalProtocoltotheUnitedNationsConventionontheRightsofPersonswithDisabilities.Availableat:https://www.ohchr.org/en/hrbodies/crpd/pages/optionalprotocolrightspersonswithdisabilities.aspx9In2014,thegovernmentlaunchedascopingconsultationtocollectinputfromthecivilsociety,tradeunions,politicalparties,governmentalinstitutionsandthegeneralpublicontheHumanRightsFrameworkinMalta.AcommonrecommendationinmostofthefeedbackreceivedreferredtothesettingupofanindependentNationalHumanRightsInstituion(NHRI).Moreinformationcanbefoundhere:https://meae.gov.mt/en/Public_Consultations/MSDC/Pages/Consultations/HumanRights.aspx10BillNo.104:UnitedNationsConventionontheRightsofPersonswithDisabilitiesBill(2015).Availableat:https://parlament.mt/12th-leg/bills-12th/bill-no-104

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• thattheBoardsetupbytheEOAwiththeaimofdeterminingwhatisreasonableshouldhave

its current scope changed and focus on seeking accommodation rather thanwhat hinders

suchaccommodation;

• with regards toArticle 19of theConvention (on the rightof personswithdisability to live

independently),itisrecommendedthatthisrightwithintheEOAshouldbeamendedsothat

disabled persons are provided with a choice of living arrangements with the necessary

support;

• thattheobligationsofguardiansofpersonswithdisabilityaresubject totherightspresent

withintheEOA,particularlytherightpresentinarticle3(8);

• the contribution that employers are asked to contribute when not complying with the

employmentquotaaretobeincreasedpossiblyuptotheminimumwage,thusreducingthe

possibilitythatemployersoptoutfromemployingpersonswithdisability(anissuediscussed

moreindepthinthe‘Employment’section);and

• thatmoraldamagesasenvisagedintheEOAareincreased.

Zoomingfurtherin,Bezzina(2015)looksatinteragencycollaborationandtheNationalPolicyon

theRightsofPersonswithDisability11of2014,exploring itsorigins,drafting,which interestswere

addressed and which were the pressure groups lobbying for such a policy. After conducting

interviewswithrepresentativesofdifferentgovernmentdepartmentsaswellas theCRPDandthe

Kumitat Azzjoni Lejn Soċjeta’ Ġusta12, the author reports that while most interviewees express

similar ideasofwhat theyunderstandby interagency collaboration–andall of themagreeon its

advantages–fewareconvincedthatthisisactuallyhappenninginMalta.Furthermore,thereseems

tobeanagreementthatinteragencycollaborationshouldbeatop-downprocess,startingatthetop

levelsoftheagenciesinvolvedandthenflowingtowardsthelowerlevels.Incontrasttothis,notall

interviewees agree at what stage in policymaking interagency collaboration should commence.

Interestingly, Bezzina finds that this type of collaboration was more present in the process of

formulating the Initial Report submitted byMalta under article 35 of theUNCRPD13, than on the

afore-mentionedpolicyand theconsultativedocument thatwas issuedprior to thepublicationof

thepolicyitself.

Farrugia(2015)andBrincat(2014)toolookatMalta’scompliancewiththeUNCRPD,specifically

with regards to its articles12 (onequal recognitionbefore the law)and13 (onaccess to justice),

11NationalPolicyontheRightsofPersonswithDisability(2014).Availableat:https://activeageing.gov.mt/en/Pages/National-Policy-on-the-Rights-of-Persons-with-Disability.aspx12https://activeageing.gov.mt/en/News/Pages/Jitwaqqaf-il-Kumitat-Azzjoni-Lejn-So%C4%8Bjeta'-%C4%A0usta.aspx13Thereportisavailableat:https://www.gov.mt/en/Government/Press%20Releases/Documents/pr150271a.pdf

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arguing thatMalta is not in line with the Convention on these aspects as its laws are based on

substitutedecision-making,ratherthansupporteddecision-makingasproposedbytheUNCRPD.The

Mental Health Act14 still permits interdiction and incapacitaion, which revoke and limit the legal

capacityofthepersonconcerned,whiletheUNCRPDclearlyarguesthattheseshouldbeabolished.

Guardianship legislation15, although a step in the right direction and an improvement on the

previously existing legal tools – such as in providing for concrete measures to ensure the

accountabilityoftheguardians–isstillahalfmeasureanddoesnotfullycomplywiththeUNCRPD.

FarrugiaandBrincatthusarguefor:

• supporteddecision-makinglegislation;

• moreregularreviewsoftheguardianshiporders,

• theassignmentsofmonitorstoguardianships;and

• theintroductionofanAdultProtectionAct.

Relatedly,Ellul(2015)analysestheMentalHealthActandthehumanrightsandsocialinclusion

ofpersonswithmentalhealthproblems(whicharefurtherexploredinthesub-section‘Personswith

MentalHealthIssues’).Theauthorexploresthediscriminationandstigmathatpeoplewithmental

healthproblemsfaceandanalysesthevariousprovisionsfoundintheMentalHealthActinrelation

to the UNCRPD. She argues that such provisions as those regarding community based services,

voluntaryadmissiontoamentalhealthfacilityandthesettingupoftheOfficeoftheCommissioner

forMentalHealth16areallmeasureswhichhelptosafeguardthehumanrightsanddignityofpeople

withmentalhealthproblems.However,shealsonotesthattheMentalHealthActdoesnotdoaway

with involuntary admissions, and suggests that it should bemade explicitly clear throughout the

provisionsthatinrespecttoadmissionstomentalhealthlicencedfacilities,voluntaryadmissionsare

thepreferredalternativestoinvoluntaryones.

Human rights with regards people with mental health problems are also explored by Gatt

(2016),who looks at the prohibition of inhuman and degrading treatment of prisoners under the

European Convention for the Protection of Human Rights and Fundamental Freedoms (ECHR)17,

whose provisions are incorporated inMaltese law. Gatt looks at the treatment of prisoners with

mentalhealthproblemsataEuropeanlevelandalsoinMalta,includingcourtcaseswithregardsto

this issue. She concludes that in Malta, an infrastructural change for the accommodation of

14Chapter525oftheLawsofMalta:MentalHealthAct.Availableat:http://www.justiceservices.gov.mt/DownloadDocument.aspx?app=lom&itemid=11962&l=115ActNo.XXIVof2012.Availableat:http://justiceservices.gov.mt/DownloadDocument.aspx?app=lp&itemid=24286&l=116https://deputyprimeminister.gov.mt/en/CommMentalHealth/Pages/Commissioner-For-Mental-Health.aspx17EuropeanConventionfortheProtectionofHumanRightsandFundamentalFreedomsoftheCouncilofEurope(1953).Availableat:https://www.echr.coe.int/Pages/home.aspx?p=basictexts&c

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prisonerswithmentalhealthproblemsattheMountCarmelHospital(MCH)18ForensicUnitneedsto

takeplace:theplaceisnotlargeenoughforthealways-increasingnumberofprisoners.Theauthor

mentions that other states are trying to divert prisoners with mental health problems from the

criminal justicesystem(anissuewhichisdiscussedfurtherinthesubsequentsection)byproviding

prison diversion schemes,which have contributed towards reducing overcrowding in prisons. She

alsoemphasisestheimportanceofprisonauthoritiesandprisonersmaintaininganactiveroleinthe

developmentprocessofdomesticmentalhealthpolicydevelopment.Furthermore, reintegratinga

prisonerwithamentalhealthproblemback intosocietywillcauseexacerbatedchallenges ifone’s

mental healthneedsarenot addressed. In addition, thereneeds tobea continuationof the care

fromprisontothecommunitysetting,giventhatmanypersonswithmentalhealthproblemsalready

facedifficultiesinmanagingtheirbasicneedswithoutsubstantialdistress.Therefore,itisofutmost

importance that offenders, after completing their sentence, are given guidance and support to

maintainahealthyandcrime-freelifestyleinthecommunity.

‘LegalInsanity’andLegalCapacity

Legal‘Insanity’

The four dissertations discussed in this sub-section look at ‘legal insanity’19 and other grounds of

exemptionrelatedtodisabilityundertheMalteseCriminalCode20.

Camilleri(2017),D’Amato(2009)andZammit(2001)allexplorethelegalinsanityplea,albeit

fromdifferentaspects.TheMaltesecourtcanonlycondemnapersontohavecommittedacrimeif

theyhave the intention tocommit thatact;hence if suchaction is committedbyapersonwho is

deemedashavinglegalinsanity,thecourtcannotcondemnthatperson.However,asCamilleriand

Zammitobserve,theMalteseCriminalCodedoesnotdefinewhatlegal insanityisandtheMaltese

Court often uses either that provided by Common Law or the definition provided by criminal

theorists, primarily thedefinition givenby the late SirAnthonyMamo“asdiseaseof themind”21.

Consequently,Maltahasoneof themostrestrictive interpretationof this legalconcept inEurope.

Hence, both Camilleri and Zammit argue for the introduction of the concept of “diminished

responsibility”tocaterforpersonswithmentalhealthproblemsorintellectualdisability.

18https://deputyprimeminister.gov.mt/en/mch/Pages/home.aspx19 The term ‘legal insanity’ is used with regards to exculpation due to mental health problems, where anindividualisnotheldcriminallyliableifthey‘unintentionally’commitacriminalact.Thisreasoningisthebasisofdefenceofcriminalinsanity(Camilleri,2017).20Chapter9oftheLawsofMalta:CriminalCode.Availableat:http://www.justiceservices.gov.mt/DownloadDocument.aspx?app=lom&itemid=857421SirAnthonyMamo,MamoNotes1954,vol1,84

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Meanwhile, D’Amato (2009) argues that it is not possibile towholistically understand the

issues relating to criminal insanity without any appreciation of the medical perspective of the

subject, thus the law shouldmake use of medicine to understand / explain such behaviour. The

authorobserves thatgenerally threepsychiatrists areappointed toexamine theaccused’smental

capacity.Otherwitnesseslikehis/herrelativesandpeopleclosetotheaccusedarealsoexamined.

Ultimately, however, it is not the medical experts that decide the issue, but, as Camilleri (2017)

statesabove, it isuptothecourttodefine it.Therewerecases, liketheDegiorgioone22,where it

emergedthat theaccused,althoughhehadapersonalitydisorder,didnotmanifestanypsychotic

disorder.Thusalthoughhismentalcapacitieswerediminished,itwasnotsevereandthereforethe

lackof intentandvolitionalcapacitywasnotcomplete:heunderstoodhisconductandcouldhave

controlledandrefrainedhimselffromcommittingtheacts.

Zammit(2001),ontheotherhand,discussestheissueofconfinementofpersonsfound“not

guiltybyreasonofinsanity”toapsychiatrichospital,andexaminesalternativeapproachesinforeign

law. Themaindilemma surrounding the treatment of offenderswithmental disorders iswhether

they should be treated as “mad, bad, or both”, since they fall within the penal and psychiatric

systems, two systemswhichoftenhavediffering aims and functions.Among various issueswhich

Zammit explores, one argument is that those with severe forms of psycopathic personalities are

unlikelytobenefitfromanykindofmentalhospitaltreatment;andthatinmostcountriestheyare

cared for in specialhospitalsor specialunits inprisons.Moreover, theMalteseMentalHealthAct

states that if the accused is found to be insane at the time of the offence, s/he is to be kept in

custodyinahospital,“whetherornotheisinsaneatthetimeofthecriminalproceedings”.Zammit

alsoexplorestheconcernsarisingfromthefactthatsinceapersonisremandedtoMCHbyacourt

order, the Minister of Justice regulates certain aspects of his/her detention. The author thus

recommendsthatwhilethetestofinsanityshouldremainasis,thechainofconsequenceswhichare

producedbytheverdictshouldbeexamined,arguingthattheremightbeoffenderswhowerereally

insane at the time of commission of the offence but who are deterred from pleading insanity

because they prefer to be awarded a definite sentence than an indefinite stay at MCH. Other

recommendationsputforwardbyZammitarethat:

• theinsanitydefenceisraisedwithotherpreliminarypleas(thuseliminatingthepossibilityof

pleadinginsanityataverylatestageinthetrial);

• theinsanitypleabedecidedbythepresidingjudge(whowillbeaidedbyapsychiatricreport

ontheaccused),andnotbyajury;

22Ir-Repubblikata’Maltav.ChristopherDegiorgio(1997)

16

• theCourtshouldhavetheoptiontoorderthepersontodosomekindofcommunityservice,

andnotnecessarilyadmitthepersontoapsychiatrichospital.

Thusthereneedstobeamajorrethinkingofthewholesystem.

Depasquale (2005) explores a related concept to criminal insanity, that of “age and deaf

mutism”23, which are both grounds under which a person can be exempted from their criminal

punishment,orelsehavetheirpunishmentreduced.Inbothcategories,theMalteseCriminalCode

treatspersonsashavingadefect in their intellectual capacityanddevelopment; thereforeminors

under theageofnineareexempt fromanycriminal responsibility,whilst “deafmutes”under the

ageoffourteenenjoythesametreatment.Evenwhenthepersonwhois“deafmute”hasattained

theageoffourteen,theyarestillexempt,unlessthenecessary“mischievousdiscretion”(ħażen) is

proved:thereforethelawdoesnotpresumethata“deafmute”,ofanyage,iscapableofactingwith

mischievous discretion. Depasquale argues that the law should regulate society according to the

present time and age, taking into account all the advances achieved which have substantially

diminishedthegapofintellectualdevelopmentbetweenapersonwhoisdeafandapersonwhois

not. Depasquale also argues that while imprisonment should never be imposed on juveniles and

young offenders, it is of the utmost importance that such offenders are made aware of their

wrongdoingsandthedamagetheyinflictonsociety.Theauthorsuggestsvariouswaysinwhichthis

canbedone,including:theintroductionofopencentreswhichcaterforyoungoffenders(depending

ontheoffencecommittedandtheirrespectiveages);andthewiderapplicationof,asZammit(2001)

argues above, community service orders (particularly throughwork that remedies the harmdone

bothtosocietyasawholeortoaparticularperson/groupofpersons).Depasqualearguesthata

healthy juvenile justice system does not necessarily mean the total elimination of offending by

youngpersons, but ratherhavinganefficient andeffective system to tackle and rehabilitate such

offenders.

LegalCapacity

This section looks at different aspects of legal capacity which can affect disabled people’s lives,

includingtheEnduringPowerofAttorney(EPA),interdiction,andthespecialneedstrust.

The EPA was introduced under Maltese law in 2012, offering vulnerable adults having

mental difficulties because of old age and/or a disability, “an instrument of self-determined

substituteddecision-makingwhichbettersafeguardsthelatter’sautonomyandself-determination”.

This is explained by J. Attard (2017), who delves into the legislative background before the

23Theauthorofthedissertationrecognisesthatsociologistssaythatthetermisdegrading.However,thisisthetermusedintheMalteseCriminalCode(replacingtheterm“deafanddumb”).

17

introductionoftheEPA,theCivilCode24(whichregulatestheEPA)andvariouslegalconceptssuchas

substitutedandsupporteddecision-making(discussedinthe‘DisabilityRights&Non-Discrimination’

sub-section)whicharediscussedwithregardstotherelevantprovisionsfoundintheUNCRPD.The

study also includes a comparative studyof this subject coveredby various European jurisdictions,

andinternationalandregionalinstruments.J.Attardconcludesthat,underMalteselaw,theEPAis

governed by strict formalities. However, she proposes a number of measures to improve such

formalities so as to reduce asmuch as possible the chances of abuse against vulnerable people.

Theserecommendationsinclude:

• thecarefuldraftingofEPAs:whencreatinganEPA,careshouldbetakentoensurethatthe

legal document reflects themandator’s (the person onwhose behalf the EPA is created)

wishesandexpectations;

• stricter execution requirements that include a medical declaration procured within a

stipulatedtime-frame;

• theappointmentofjointmandatories:intheeventthatonemandatory(thepersonwhois

authorisedtoactonbehalfofthemandator)iseitherunabletotakeuptherole,resignsor

dies, the EPA terminates automatically. This problem could be addressed if joint

mandatoriesarenominated;

• privateandpublicsupervisionmechanisms;

• the development of a Code of Practice which provides guidance and examples of best

practicetobothpractitionersandcarersworkingwithvulnerableadults;and

• greaterawarenessofthebenefitsofEPAs.

Pace(2017)–lookingattheadministrationofpropertyofothersunderMalteseLawandthe

protection afforded to persons with disabilities – shows that this area contains fragmented

legislation, since relatedprovisionsare tobe found indifferentsectionsofMaltese laws; thusshe

recommends that these legal provisions are integrated. Furthermore, interdiction and

incapacitation, for example, follow the substituted decision-making system, asmentioned earlier.

However,Pacearguesthatnewmethods,suchastheEPA,canbefollowed.Shealsoanalysesforms

ofabuseanddiscussestheextentofprotectionthattheMaltese legalsystemoffers tovulnerable

adults(namelytheelderlyandpersonswithmentalorphysicaldisabilities) inthisarea, includinga

detailed analysis (together with a number of recommendations to improve it) of the Draft Bill

entitled the Protection of Vulnerable Older Persons and Adult Persons with Disability Act25. Pace

makestwomainrecommendationstoreducesuchabuseandtoprotectvulnerableindividuals:the

24Chapter16oftheLawsofMalta:CivilCode.Availableat:http://www.justiceservices.gov.mt/DownloadDocument.aspx?app=lom&itemid=858025https://activeageing.gov.mt/en/Pages/Protection-of-Vulnerable-Older-Persons.aspx

18

introductionof anew legislation regulating this area; and that legal provisionsofferingprotective

measures to these vulnerable adults should entail the least possible restriction to their legal

capacity,thusbeingmoreinconformitywiththeUNCRPD.

Laferla(2009)notesthatwhilemostparentsofadisabledchildhaveundoubtedlythoughtof

howtheycouldprovidefortheneedsoftheirchildaftertheirdeath,theywouldprobablyresortto

the traditional solutions available under Maltese law, since they are still not familiar with the

mechanismofaspecialneedstrust.Oneexampleofa traditionalsolutionthatLaferlamentions is

thatduring their lifetime, theparentsof adisabledpersoncan seek the interdictionof their child

anddemandthatacuratorbeappointedtotakecareofhim/her.TheCourt,afterascertainingthe

conditionofthepersontobe inderdicted,verifyingthecircumstancesandbeingsatisfiedwiththe

need to interdict, issues a Decree of Interdiction and nominates a curator (usually the parents

themselves,siblingsorcloserelatives)totakecareoftheinterdictedperson.However,thecuratoris

hedgedwithrulesandrestrictions,mainlythosewhichbindthemtohaverecoursetothecourtand

obtainauthorisationfromthecourttodisposeof/dealwiththepropertyoftheinterdictedperson.

Anotheroption, thatof anoutrightbequeath toa child,willmost likely reduceorevendisqualify

themforsocialassistance.Parentsareoftenfacedwiththepossibilityofhavingtodisinheritachild

inordertopreservethechild’srighttoreceivesocialassistance.Todaythisproblemcanbesolved

bycreatinganeffectivefinancialplanforadisabledchild,andsuchplanmustallowtheprovidingof

all that thedisabledpersonneedswithout limitingtheperson’saccess to theavailablebenefits.A

special needs trust helps parents accomplish this goal. A trust is a legalmechanism set up by an

individual(thesettlor)creatingafiduciaryrelationship inwhichoneperson(thetrustee)holdsthe

titletothetrustestateortrustpropertyforthebenefitofanother(thebeneficiary).There is thus

theinteractionof3persons:thepersonsettingupthetrust,thepersonwhowillmanagethetrust,

andthepersonwhowillbenefitfromthetrust.Thepropertythatistobeputinatrustcanconsistof

anytypeofassets,includingrealestate,stocks,cash,bonds,mutualfundsorinsurancepolicies.This

choice leaves complete freedom for the parents to manouver without the need for court

intervention, and the trustee can act autonomously when s/hemanages and administers / deals

withthepropertyheldintrust.

BioethicsandGenetics

Whiletheprevioussectionlookedathumanrightsingeneral,thissectionlooksataspecificaspect

oflegalandmoralissuesrelatedtodisability:thatofgeneticsandtherelatedfieldofbioethics.This

importantissuehasbeenplacedinasectionofitsownduetoitsemergingandcontroversialnature

which might be lost in the larger field of human rights and discrimination. While the the topics

19

explored in thesedissertationsdonotdealwhollywithdisability inMalta, the issuesare still very

importanttothisfield.

Caruana (2017),Falzon (2014)andPiscopo(2014)explorethe legalandethical issueswith

regards to disability in light of new biotechnology advancements. Falzon’s and Piscopo’s

dissertationsdealwithcases(inEUmemberstatesandtheUnitedStates)of ‘wrongfulbirths’and

‘wrongful lives’, resulting fromsuchadvancementswhichhelppeoplenotonlyplan their families,

butalsofindoutwhethertheirunbornbabyisdisabledornot,havebabiesthroughartificialmeans,

andselectbetweenembryostodiscardthosedeemedlesshealthy.Thetwoauthorslookatlawsuits

broughtbyparentswhoclaimthattheyparentedachild(veryoftenadisabledone)duetohaving

been given the wrong advice or treatment before – or during – pregnancy, thus resulting in a

‘wrongful birth’; or by disabled people themselves claiming damages arguing that their ‘wrongful

lives’ were the result of negligence on the part of professionals and/or hospitals. Meanwhile,

Caruana looks at human genetic engineering and explores the possibility that therapeutic human

germline editing26 can end up discriminating against the rights of persons with disabilities as

declared in various international human rights legislation such as the UNCRPD. Caruana explores

germlineediting–whichcanmodifythegenomeoffuturegenerationstoproduce‘designerbabies’,

thus potentially eliminating disability – from the lenses of disability justice and ableism. She

discussestheapproachthatthistechnologyisundertaking,whichisgenerallymedical,abelist,and

possiblyeugenic.

BothFalzon(2014)andCaruana(2017)concludethatadvancementsinbiotecholongycanbe

discriminatorytowardsdisabledpeople.Relatedly,Piscopo(2014)recommendsthatMaltasignsthe

European Convention on Human Rights and Biomedicine (Oviedo Convention)27 which offers the

bestrecommendationsonhowtopromotetheprotectionofhumanrights inthebiomedical field.

Meanwhile, Falzon – analysing these issues from a Catholic moral perspective – argues that

existence can never be considered an injury, thus such cases are seen as devaluing the lives of

personswithdisability,especiallywhencourtsawardcompensationbecauseof‘wrongfulbirths’and

‘wrongful lives’. According to Falzon, the way society views disability has to continue to evolve

throughtime, justiceandhumannaturesothatsocietywilltrulystarttopromoteacultureof life.

Henotes that theabsenceofaclear regulatory framework in relation toprenatal testing inMalta

may be damaging in several ways. Caruana, meanwhile, suggests that potential discrimination in

26GermlinegenetherapyiswhentheDNAistransferredintoreproductivecells.Thisallowsforthecorrectionofdisease-causinggenesthatwillbepassedonfromgenerationtogeneration.https://www.yourgenome.org/debates/is-germline-gene-therapy-ethical27TreatyNo.164oftheCouncilofEurope:ConventionfortheprotectionofHumanRightsandDignityoftheHumanBeingwithregardtotheApplicationofBiologyandMedicine(1999).Availableat:https://www.coe.int/en/web/conventions/full-list/-/conventions/treaty/164

20

human germline editing is not automatic and can be prevented if this practice is well regulated,

utilisingthelegalconceptofjustifiablediscriminationthatallowsdifferentialtreatmentthroughthe

useof reasonableandobjective criteria. Theauthoralsodiscusses the importance that thepublic

becomesmoreawareofthevalidcontributionsthatpersonswithdisabilityoffersociety.Thiscanbe

bestdonebyinvolvingpersonswithdisabilityinthesediscussions,particularlyintheformulationof

theregulations.Theauthorrecommendsthattheseregulations:

• includethatthesemeasuresaretobeundertakeninitiallyonlytopreventdeath;

• includetheagreeddefinitionofthe‘seriousness’ofconditions;and

• state that these practices follow the WHO International Classification of Functioning,

DisabilityandHealth.

Caruana’s recommendations would prove evenmore beneficial when taking into account

CremonaCaruana’s(2016)study.CremonaCaruana(2016)looksatthevariousmodelsofdisability

proposedovertime,withthebiopsychosocialmodelbeingthepreferredoneatthetimeofwriting.

His dissertationdiscusses the stories of various disabledpeople found in literature and films, and

goesontodiscusstherelationshipbetweentheworkofdisabilityactivistsandbioethics(thestudy

of ethical issues in the fields of biology andmedicine), with special reference to transplants and

euthanasia.Herecommendsthatthetwoareasofbioethicsanddisabilityshouldshouldcompliment

eachotherandthatbioethicsshouldsupportpersonswithdisabilitytohavethebestqualityoflife

possible.Onewayofdoingthisisbyhavingbioethicsfocusontrainingprofessionalsworkinginthe

disabilityfieldtochangetheirapproachwhencaringforandtreatingtheirclientswithdisability,and

acknowledgethattheyhaveanactiveroletoplayratherthanremainingpassiverecipients.

21

LifeAreas

Education

Educationfordisabledstudentsisasubjectresearchedfrommultipleaspects,asseeninthissection.

Researchareasincludeinclusivepractices;learningsupportzones;studentswithdyslexia,Attention

Deficit Hyperactivity Disorder (ADHD), learning disabilities, Social, Emotional and Behavioural

Difficulties (SEBD), challenging behaviour, and high abilities; Inclusion Coordinators’ (INCOs) roles;

primary, secondary and tertiary education; the transition from secondary and post-secondary

educationtothenextstage;andsportineducation28.

StudentswithDyslexia

Briffa (2015) investigates literacy skills in nine year-old students with dyslexia in state schools in

MaltaandGozo.Interviewingalsotheirparentsandteachers,Briffaexploresthevariousdifficulties

thatareexperiencedbythesestudents,bothrelatedtoliteracyaswellastootherareasoflearning

and overall educational achievement. The research confirms that bilingualism increases the

educational difficulties encountered by these students. Research participants also express the

opinion that the curriculum is too heavy, and that too many changes within the curriculum are

happeningallatonce.Examinationsalsoincreasethepressureonallstakeholdersinvolved.Parents

andteachersfeelthattheyarenotconsultedenough.Trainingforbothparentsandteachersisalso

neededinordertohelptheirdyslexicstudents/children.Teachers,forexample,arenotawareof

relevantresourcesavailablefromtheEducationDepartment.Theimportanceofearlydiagnosisand

intervention, collaboration between the various professionals (including the complimentary

teachers), and parental involvement are also emphasised. It also emerges that the children with

dyslexia themselves prefer active involvement in learning rather than passively receiving

information, findingsthatareconfirmed instudieswithchildrenwithothertypesofdifficulties,as

seenintherestofthissection.

StudentswithADHD

Camilleri (2015) investigates theexperiencesof six sixteenyear-oldmale studentswithADHDand

their parents and finds that they experience school negatively. These students find it difficult to

engageinthelearningprocess,andfeelthatthereistoomuchemphasisonacademicsubjects.They

28Otherdissertationsdealingwitheducationand studentswithdisabilityexploreeducational interventions,ratherthansocialandenvironmentalfactors.Thus,whilebeingoftheutmostimportance,theyarenotdirectlyinlinewiththescopeofthisreviewandwerenotincluded.

22

also feel that theireffortsarenot recognisedandappreciatedenoughby their teachers.Relations

withschoolstaffaregenerallyreportedtobedifficult,althoughrelationswiththelearningsupport

educators (LSEs)29 tendtobebetterandcloser.However, someparticipantsexpress theviewthat

their LSE also hinders their social development. Thus Camilleri notes the importance of effective

classroommanagementandaflexiblecurriculumthatallowslessonstobemorestimulating,similar

tofindingsnotedinthe‘Dyslexia’and‘SEBD’sub-sections.Theparents,too,complainoftherigidity

of theeducationsystemwhichdoesnotpermitenough flexibility to let thesestudentsdevelop in

theirownway.Camillerirecommends:

• fostering a better understanding and collaboration between students, their parents and

schoolstaff;

• moreawarenessaboutADHD;

• more training on teachingmethods to address the learning styles of studentswith ADHD

(findingswhich emerge in relation to other types of disabilities, as noted throughout this

section);and

• theamendmentofexistingpolicies related tobehaviourmanagement, thecurriculumand

roles of school staff, in order to ensure that schools are truly inclusive to students with

ADHD.

StudentswithSEBD

Cefai(2009)analyseshowSEBDstudentsareincludedorexcludedintheMaltesestatemainstream

primaryclassrooms.Her researchshows thatanurturingand inclusiveschoolethoswouldhelp in

supportingboththeteachersaswellasthestudents.Cefaiputsforwardtheviewsofchildrenwith

SEBD,who,amongothersuggestions,expressthewish:

• ofnotbeingimmediatelyblamedbytheirteacherswhentheymisbehaveinclass;

• tobegivenextrahelpafterschool;

• tohavemoreindividualhelpinclass;

• tohavetheteachersimplifyingthelessons;

• to have more Personal and Social Development (PSD) lessons; and to move during the

lessons, as it is impossible for them to stay concentrated on tasks all day long without

moving (this links to Spiteri’s 2012 findings – discussed further below – on the role that

physicalactivityplaysinimprovingchildrenwithSEBD’sexperience).

Both Cefai and Camilleri (2012) –who examines the relationship between teachers and students

with SEBD in a secondary boys’ state school – talk about the role of teacherswith studentswith

29FormerlyknownasLSAs(LearningSupportAssistants).

23

SEBD.Camillerireportsthatteachers’attitudescanbeafactorininducingmisbehaviourandthatthe

studentswithSEBDparticipatinginherresearchfeelthatteachersprejudgethemwithouttakingthe

opportunitytofirstgettoknowthem(recallingCefai’sfindingsdiscussedearlier).BothCamilleriand

Cefai note that their research participants (teachers and students) feel that teachers lack the

knowledge,confidenceandmotivationtodealeffectivelywiththesestudentsandthattheFacultyof

Education30needs toadequately train its student-teachersonSEBD.Cefai also suggests that,with

theever-increasingnumberofSEBDstudents, localprimaryschoolsneed tohavespecificplansof

action on how to cope and deal with these students. Together with the plan of action, schools

shouldalsobeequippedwithapracticalbehaviourpolicy.Teachersshouldbegivenanactivesayin

thedevelopmentofthisplan.Cefaialsopointsouttheneedfor:

• thedevelopmentofadequatesyllabi;

• aninclusivepedagogy;

• effectiveteachingresources;

• effectivehumanresources;and

• a new approach to teaching and learning. This would include emotional literacy, an

intervention strategy which centres upon raising the pupils’ achievement as well as their

personalandsocialdevelopment.

CamillerialsonotesthatstudentswithSEBDarguefor:

• moreflexibleclassroommanagement;

• morepositiveprovisions(suchasprivatereprimands),ratherthanpunishments;

• caringteacher-studentrelationships;and

• learningandmentoringgroups.

Finally,Cefaialsosuggeststheuseofnurturegroups.

Theroleofthesenurturegroups(temporarytransitionalsettings–lastingfromonetofour

semesters – that prepare pupils with SEBD to cope better with the demand of mainstream

schooling)isexploredbyFenech(2012)andCutajar(2009).Inherdissertation,Cutajarimplements

and evaluates a Nurture Group programme to support two students with SEBD who live in a

residential home. The study reveals that both children improved in nearly all areas assessed, and

werereintegratedbackintomainstreamschool.Furthermore,thenurturegroupstaffleftapositive

impactonmainstream staff, in termsof adoptingmorenurturing approaches in their classrooms.

However, theauthornotes that thegroupdidnothaveall the characteristicsof anurture group,

whichreducedtheeffectivenessoftheprogrammeanddidnotallowthenurturegroupprogramme

to reach its full potential. The author recommends that a nurture group should comprise ten to

30https://www.um.edu.mt/educ

24

twelvestudentsandbelocatedwithinamainstreamschoolsettingsoastofaciltiatethechildren’s

reintegrationintothatschool.Additionally,Fenechreportsthatpartofthesuccessofnurturegroups

isduetotheinvolvementofmainstreamteachers,togetherwithgoodcommunicationbetweenthe

nurturegroupstaffandthemainstreamteachers.However,the latterexpresstheirdesiretohave

moretimewhichtheycandedicatetothesegroups.Throughherstudy,Fenechalsofindsthatthe

nurturegroupshelpthewholeschoolinbeingamorenurturingplaceforitsstudents.Fenechmakes

anumberofrecommendations,including:

• better communication between stakeholders involved in order to ensure continuity of

servicesprovidedandasmoothtransitionfrommainstreamclasstothenurturegroupand

viceversa;

• more support tomainstream class teacherswho should all benefit from the services of a

teachingassistantintheirclass,thusensuringthattheclassroomteacherhasmoretimethat

canbededicatedindividuallytotheirpupils;

• classeswithasmallernumberofpupils;and

• professionaltrainingofnurturegroupteachers.

Since parental involvement seems to be minimal in the schools that Fenech studies, she also

suggestsfurtherresearchtoseewhatiscausingsuchbarriers.

Camenzuli (2012), Grech (2012), Spiteri (2012) and Zahra Lehtonen (2012) explore other

avenuesofsupportingchildrenwithSEBD.LearningSupportZones(LSZ)areregularweeklysessions,

offeredoveronesemestertostudentswithSEBD,toprovidethemwithanopportunitytoimprove

their skills and engage more constructively in the classroom. Zahra Lehtonen investigates the

reintegrationofstudentsfromtheLSZbacktotheirclassroom.Takinganactionresearchapproach,

the author, herself a coordinator of one of these zones,manages the reintegration of eightmale

studentsofasecondaryschool.Sheidentifieseightmainfactorswhichcontributetothesuccessful

reintegrationofthesestudents:

• parentalsupport;

• therelationshipoftheLSZcoordinatorwiththeirstudents;

• thecontinuationofsupportbyotherteachers;

• aneffectiveLSZprogramme;

• thepreparationofstudentsfortransitionintoandoutofLSZ;

• evaluationofstudents’progressandreadiness;

• peersupportandrelationships;and

• fullsupportfromtheSchoolManagementTeam.

Theauthorrecommendsthatthereintegrationprogrammeofthesestudents:

25

• isgivenitsdueimportance;

• beincludedintheLSZGuidelines;

• andformsanintegralpartoftheprogrammeofeachstudentattendingthesezones.

AnotheravenuewhichcanbeexploredinordertosupportstudentswithSEBDistheCircle

of Friends, which Grech (2012) looks at in her dissertation. This programme also endeavours to

createasafeenvironmentwherinagroupofpeoplesupportapersonexperiencingexclusion(inthis

case,astudentwithSEBD).Grech,aPSDteacher, formedthisCircleofFriendsandfoundthatthe

disabledstudentimprovedbothhisself-conceptandhisself-esteem.Attheendoftheprogramme,

thestudent:

• managedhisbehaviourbetter;

• startedtooffersolutionstohisdifficulties;

• wasabletobuildnewrelationshipswithsomeofhispeers;and

• startedtobeincludedbyhispeersintheiractivities.

All the participants were able to better identify the positive qualities of the person they were

supporting. A program like Circle of Friends,which is tailoredmade for studentswho experience

neglectandexclusion,canbeausefultooltobeusedbytheteacher.

Camenzuli(2012)specificallyexploreshowtheuseofInquiry-BasedLearning(IBL)canhelp

studentswithSEBDbetterlearnMathematicsandreportshowtheresearchparticipants–boysina

Form 3 class of a church school – seem to enjoy and appreciate taking an active part in Maths

lessons,andexhibitnodeviantbehaviourduringtheselessons.ThisstudythusfoundthatIBLcanbe

ofbenefitwhenteachingMathstostudentswithSEBD:itseemstoexploit,ratherthaninhibit,SEBD

characteristics. Such benefits aremore pronouncedwhen IBL is utilised in a cooperative learning

envirnonment where students feel secure and work as a team. The author encourages Maths

teacherstoadoptIBLandrecommendsschoolstoincludeIBLintheirSchoolDevelopmentPlanand

Training.

Spiteri(2012),onhispart,looksattheeffectthatphysicalactivitycanhaveinimprovingthe

school experience of children with SEBD, which recalls Cefai’s (2009) findings described in the

beginning of this sub-section. Spiteri reports that his research participants (including the Sport

Promotion Unit staff, Physical Education teachers, class teachers and heads of school of primary

schools)believethatphysicalactivitycanhaveapositiveeffectonstudentswithSEBD.Theauthor

writes about the importance of educational practitioners being able to develop flexible school

policiesandpracticesbasedonthedesiresandneedsoftheirstudents.Thismeansthatifchildren

withSEBDarerespondingpositivelytophysicalactivities,suchactivitiesshouldbemaintained,ifnot

increased. The researchparticipants alsoemphasise that competitivephysical activities veryoften

26

are not suitable to these students as most of them find difficulty in coping with the negative

emotionsthatcompetitioncreates.Physicalactivitieshavetobewellplannedtoencourageeffortby

thestudents,goodsportsmanship,andthepossibilityofimprovingtheirperfomance.Theresearch

findsthatpositivereinforcement,rewardsystemsandactivitieswithshorttermtargetsaresuitable

tobeusedwithstudentswithSEBD.Thesestudentsalsofindthatphysicalactivityhelpsthemtouse

theirenergyinapositivemanner.

StudentswithSevereDisability

Abela(2012)reflectsupontheexperiencesofsocialinclusionorexclusionofboyswithmoderateto

severe disability attending secondary school, and finds that severe communication difficulties are

related to higher levels of exclusion by peers (a topic discussed in greater detail in the next sub-

section).Shesuggeststhatchildrenlikethefourboyssheobservesinherresearchshouldbetaught

howtointeract,andthatspeechisnottheonlymediumtowardssuccessfulcommunication:there

are gestures, signs, pictures and objects. Children need to be encouraged to explore alternative

means of communication. Assistive Technology (AT) – which is explored more in the section

‘Information and Computer-Based Technology’ – is another area that needs to be taken into

consideration:inthecaseofseverecommunicationdifficulties,ATcanmakeiteasierforchildrento

makethemselvesunderstood.

StudentswithHighAbility

Since the concept of inclusive education is linked to individual educational needs, it also includes

studentswithhighability(“giftedandtalentedstudents”).However,Maltesedevelopments inthis

areaarestillverylimited.ThisisthetopicofGhirxi’s(2012)dissertation,whoinvestigatesthesocial

and educational experiences of students with high ability as perceived by themselves and their

teachers.Shenotesthatthemoststrikingfindingfromherresearchisthehighmotivationofthese

students:theyareinquisitive,striveforexcellence,areawareoftheirstrenghts,areself-disciplined

andshowgreatpersistencewhenfacedwithchallengingtasks.Ghirxinotesthatthesestudentshave

high expectations for their future. She concludes that their educational and social needs require

attention inmainstreamclassesandthat if theyhavea facilitativeenvironment (includingsupport

fromparentsandteachers),theydowellbothsociallyandacademically.Theauthornotestheneed

for:

• furtherresearchinthisarea;

• theprovisionofadequatementoringandidentificationofunderachievers;

• theprovisionofopportunitiestotalentedstudentstoworkwithpeersofsimilarability;

27

• parents and teachers to have realistic expectations and give talented students the

opportunitytodecideforthemselves;

• trainingtoteachersongoodteachingtechniquesfortalentedstudents;and

• anationalpolicyontalentedstudents.

PerceptionsandAttitudestowardsStudentswithDisability

Whileperceptionsof,andattitudestowards,peoplewithdisabilityemergesinmultipledissertations

reviewedinothersections,twodissertationsdealspecificallywiththeseaspectsineducation.Borg

(2009) and Dimech (2007) explore these aspects with regards to primary and secondary school

students respectively. Borg, taking a sample of 4mainstream classes, finds that the studentwith

physicaldisabilitybutwithageappropriatecognitiveandsocialskillsishighlyacceptedbypeers.In

contrast,pupilswithdisabilitywholackageappropriatesocialskills,socialemotionalandintellectual

maturity–orhavebehaviourdifficulties–arerejectedorisolated,andhavealowersocialposition

thantheirpeers(confirmingAbela’s2012findingsdiscussedintheprevioussub-section).Theauthor

also notes that the climate in the class of the child with physical disability ismore inclusive and

providesmoreopportunities forthechildwith IndividualEducationalNeeds(IENs)torelatetoher

peers;whileintheotherclassesthereisevidenceofprejudiceagainstthosewhodonotsharethe

desirablecharacteristicsofintellectualabilityandsociability.Thus,Borgquestionsthebenefitsone

expectsfrommainstreamingofchildrenwithIENsinregularschools,sincethemainstreamingofthe

children in the study did not automatically improve their relationships. The findings of this

dissertation also show that teachers are not always in favour of inclusion; and that teachers’

viewpointsandattitudesarecriticalinguaranteeingthesuccessofinclusivepractices.

Dimech (2007), on the other hand, looks at a sample of boys in three secondary church

schools,eachofwhichhasadifferentexperienceof inclusion:thefirstonewasparticipating inan

‘Inclusion Programme’with a special school31 for disabled students; the secondonehad students

withdisability in their classes;while the thirdonehadno studentswithdisabilitypresent in their

classes.In-classinclusionisfoundtobemoreinfluentialthananInclusionProgramme(atleastinits

thencurrentform).Thetypeofcontactandtheseverityofthedisabilityalsoplayanimportantrole

in the formation of perceptions, attitudes and behaviour. In fact, the study finds that the

interviewees see themselvesmore as helpers of their partners at the special school, rather than

friends.Furthermore,thesamestudentshavereservationswhenitcomestointroducingtheirpeers

with disability to their circle of friends. Similar findings emerge with the group which had no

31SpecialschoolshavenowbecomeResourceCentres.Moreinformationcanbefoundhere:https://education.gov.mt/en/education/student-services/Pages/Special_Education/Resource%20Centres/Resource-Centres.aspx

28

studentswithdisabilitypresentintheirclasses.Thisimpliesthatthevisitstothespecialschooldid

not have the desired positive effects on the students in the first group. Their contact cannot be

described as realistic, since it only consisted of two visits during the scholastic year; while the

contactthatthesecondgroupexperiencedwasanintegralpartoftheschooltimetable,thatis,both

students with and without disability followed the same curricula (albeit with some slight

modifications in certain cases). Thus, since they had more time and could become much more

involvedinpurposefulactivities,thesecondgroup’sperceptions,attitudesandbehaviourstowards

their peers with disability were improved and reinforced. Furthermore, the way the Inclusion

Programme was being implemented brought disruption to the activities going on at the special

school (which then also resulted in challenging behaviour from the special school students,

renderingthevisitorsmorelostanduncomfortable)andtheparticipantsdidnotalwaysunderstand

whatwasgoingonduringthevisitstothespecialschool.Thespecialschoolteacherssuggestinviting

thewhole class of a studentwith a disability from themainstream to join him during his special

therapysessionsattheirschool(thiswasthenbeingcarriedouttoasmallextentatprimarylevel:

theysuggestthisshouldalsobedoneatsecondarylevel).Theauthorsuggeststheimplementation

ofaprogrammeinMaltathatwasimplementedinIreland,wherestudentswithseveretoprofound

disabilityparticipated in linkprogrammeswiththeirpeerswithoutdisability forawholescholastic

year,onceaweek,foractivities inarts,craftsandphysicaleducation.(Dimechnotesthatasimilar

programmewas in factalreadybeingusedbyaschool inGozo.)Finally,another ideaproposedby

oneoftheintervieweeswastoinvitestudentswithdisabilityfromthespecialschooltohisschool.

Theseexperienceswouldbebeneficialiftheybecomepartoftheregulartimetable,thuslayingthe

foundationsforaframeworkwhichwouldimproveinclusionandexcludesegregation.

TheRoleoftheINCO

Inclusive education is further explored by Tanti Rigos (2012), who looks at the role of the INCO

throughtracingthepaththatledtothe“birth”ofthisroleandtryingtoidentifyinwhoseinterests

she,asanINCO,continuestocarryoutobservations,judgementsandassessmentsonstudents.She

arguesthatthecreationoftheroleoftheINCO(justlikethewidermovementtowardsinclusionand

inclusive education) was not triggered by caring sentiments and disinterested efforts to help

disabledpeopleandstudents:rather,itwasbornoutofamuchwiderpoliticalprojectfueledbythe

needs of the economy. Evidence of this is the development of one syllabus for all students.

Nonetheless,theauthorarguesthattheINCOcanserveapositivepurpose,bothwithinschooland

within society.While the roleof the INCOmightbe“dangerous”because itpushes forward some

agendaofan institutionthathastakenthe leaddiscourse inthematter, itcanstillpromotea just

29

society, initially through practices of inclusion in schools which should later be disseminated to

societyatlarge.

TheTransitiontoSecondaryEducation

Borg (2012)explores the transitionofboyswith IENs fromprimary tosecondayschools.Exploring

the views of professionals, students and their respective parents / guardians, the author

recommends:

• moreindividualattentiontothesestudents;

• listeningtowhattheyhavetosay;

• moretrainingtoteachersinvolved;and

• awhole-schoolapproach.

Shealsoproposesasampleofaconceptualsocio-emotionallyliterateprogrammeforstudentswith

IENswhichwouldaddresssuchissuesas:

• thepeerpressureexertedonthesestudents;

• the difficulties encountered by these students when relating with their parents, their

teachersortheirfriends;

• thedifficultiesinlearning;

• theimportanceoffriendships;and

• how to tackle bullying, stress, anxiety and lack of self-esteem, and expressing themselves

abouttheirfeelings.

TheTransitiontoPost-SecondaryLifeandBeyond

Galea (2015) andMula Falzon (2012) explore the transition of students with learning disabilities

fromsecondaryandpost-secondaryschooltothenextstageoflife.Galearesearchesthistopicwith

regards to students who are eighteen years old and attend a Resource Centre, and finds that

students’aspirationsdiffer–beinghigher–tothoseoftheirparentsandeducators(afindingsimilar

toonesdiscussedinthe‘Children’section),indicatinganelementofoverprotection(athemewhich

is recurrent throughout other dissertations). However, the students interviewed identify their

parents as themain actors whowill be supporting them in finding employment.Meanwhile, the

Resource Centre offers these students vocational subjects such as ‘Independent Living Skills’ and

‘EmployabilitySkills’.Theauthormakesanumberofrecommendations,including:

• trainingtoparentsregardingoverprotection;

• moreinclusivepractices(suchaspeermentoringsystem)insecondaryschools;

• self-advocacytrainingtostudentswithlearningdisabilities;

30

• long term policies to guarantee a steady flow of services to promote the activation of

disabledpersonsintoemployment;

• moreinformationtostudentswithlearningdisabilitiesaboutthebenefitstheyareentitled

towhenemployed;

• moreawarenessandtrainingtoemployersontheseissues(whichis,onceagain,arecurrent

theme,furtherdiscussedinthe‘Employment’section);and

• wellplannedtransitionprogrammes.

Fortransitionprogrammestobesuccessful,MulaFalzon,whodevelopstransitionprogrammesfor

eightmale government secondary school students and their families, states that they have to be

student-centred, help the student to develop the necessary skills for self-determination and self-

advocacy,andshouldincludetrainingindailylivingandsocialskills.MulaFalzonfindsthat–during

the transition period from secondary school to post-secondary life – parents and students

experience emotions such as fear, worry, a degree of overprotectiveness and a sense of

helplessness. Parents demandmore accessible information in order to be in a better position to

make informed choices and support their offspring during this transition. Hence, the researcher

recommends the development of a comprehensive booklet containing information on available

services inthisarea, includingpost-secondarycoursesandtrainingschemes.Cooperationbetween

thedifferentprofessionalsinvolved(INCOs,guidanceteachers,collegecareeradvisors,teachersand

LSEs) is also emphasised. On a national level, the author calls for a national policy on the

developmentoftransitionplanningpractices, thusempoweringstudentsandtheir familiestoown

thetransitionprocess.

Pleven (2015) explores the experiences of eight peoplewith intellectual disability in their

post-secondaryyearsattendingtheMaltaCollegeofArts,Science&Technology(MCAST)32Pathway

toIndependentLivingProgramme33andtheKeySkillsforIndependentLivingCourseattheInstitute

ofTourismStudies (ITS)34.She findsthatmoremainstreampost-secondaryoptionsareneededfor

people with intellectual disability, as well as more awareness on the available post-secondary

options.Whiletheresearchparticipantsnotetheirpositiveexperiencesatthesetwoprogrammes,

someofthemencounteredsomechallengeswhentheystartedmoremainstreamcoursesatMCAST,

includingbullyinganddifficultyofcontent.Thisindicatesthatmoresupportisneededforstudents

with intellectual disability in mainstream courses in order to bridge the transition to more

mainstreamcoursesatMCAST.DisabilityawarenesstrainingforstudentsatMCASTandITSaswell

as teaching basic skills such as using public transport and self-advocacy skills to people with

32https://www.mcast.edu.mt33https://www.mcast.edu.mt/15434https://its.edu.mt

31

intellectual disability are also very important.With regards to the outcome of mainstream post-

secondaryeducation,mostparticipants remark that thecourses that they followedatMCASTand

ITShavefurtherpreparedthemforemployment.

TheUniversityExperience

Spiteri (2015) delves into the experience of three university (undergraduate and postgraduate)

studentswithphysicalandvisualdisability.Twoofthesethreestudentsdrivebutonlyoneuseshis

owntransporttogotouniversity,becauseofparkingproblems.Barrierstoinclusionexperiencedby

allthreestudentsarevarious,includingphysicalandattitudinalones,togetherwithlackofsufficient

support services. This study also shows that these students have to bemore resilient than their

peers to be able follow through their studies, thus increasing their stress levels. Although

experiencingadegreeofisolation,theyalsohavefriendswhoveryoftenservetofillinthegapsand

providethesupportneededbythesestudents.Theparticipantsarecriticalofthesupporttheyare

givenbytheauthoritiesasveryoftentheyarenotindividualisedenough,especiallywhenitcomes

toexams,timetablingandseatingfacilitiesinlecturerooms.Theauthorstronglyrecommends:

• moredisabilityawareness(arecurrentthemethroughoutdissertationsdiscussedinvarious

sections);

• theimplementationoftheprinciplesofUniversalDesign35(aconceptalsorecommendedby

dissertationsdiscussedinthe‘Leisure,CultureandSport’and‘Children’sections);

• bettersupportservices;and

• moreconsultationwiththestudentswithdisabilitythemselves.

Employment

Thesevendissertationsexploredinthissectionlookatdisabledpeople’semploymentinMalta,from

disabled people’s and employers’ perspectives. Four of them look at employment from the legal

aspect (other legal aspects related to disability are dealt with in the ‘Human Rights and Legal

Aspects’partofthereview);whiletheotherthreelookattheemploymentofpeoplewithphysical

and intellectual disability and the effectiveness or otherwise of the recently enforced quota

legislationsystem:the2%quotaofdisabledemployeesthatanemployerwhoemploys20peopleor

more has to employ. Thismeasure, introduced through the 1969Disabled Persons (Employment)

35MoreinformationontheUniversalDesignPrinciplescanbefoundhere:http://universaldesign.ie/What-is-Universal-Design/The-7-Principles

32

Act36,wasonlyenforcedin201537byintroducinganannualcontributionthatemployershavetopay

iftheyfailtomeetthisquota.

Inhisdissertation,Axisa (2018)conducts interviewswith tenMalteseemployers–coming

from different service industries in the private sector – who have disabled employees in their

workforce. Axisa reports that the disability quota in employment is still a grey area amongst

employers, with many unanswered questions, mixed feelings and misconceptions about persons

withdisabilityinemployment:whilealltheresearchparticipantsadmitthattheirknowldegeofthe

quota increased dramatically when the government decided to enforce it, most of them lack

detailed knowledge of it. Most of them do not have a specific policy regarding persons with

disability,withsomeevenquestioningitsneed.Manyexpresstheirconcernthattheyhavedisabled

employeeswhoarenotregisteredandhencetheydonotcountwhenitcomestoestablishingtheir

quota.Participantsalsoadmitthattheyreceivefinancialandotherhumansupport(mainlythrough

jobcoaches)torecruitdisabledemployees,butveryoftenthehumansupportisofashortduration

andthusnotenough.Ultimately,mostparticipantsarescepticalaboutenforcementandsomeeven

arguethatthecontributionwhichemployershavetopay if theydonotsatisfythequota issimply

anothergovernmenttax.Amongotherrecommendations,Axisarecommendsthatmoreresearchis

carriedoutonthissubject;whileoneoftheemployerssuggestsmoreawarenessandeducationto

employersontheseissues.

While Axisa looks at the employment of people with disability from the point of view of

employers, I.M. Zammit (2017) conducts interviewswith both people with physical disability and

alsowithHumanResourcesmanagers.Amongotherfindings,Zammitreportson:

• thestigmaanddiscriminationexperiencedbydisabledjobseekers;

• thelackofdisabilityawarenessofrecruiters;and

• thegenerallypositiveeffectthatthequotaenforcementsystemhasontherecruiters.

HisstudyalsoshowsthelackofaccessibilityinMalta(athemewhichemergesinotherdissertation

discussed throughout this review), together with other barriers, and concludes that Maltese

jobseekerswithaphysicaldisabilityhave lesschancesofbeingemployedwhencomparedtotheir

non-disabledpeers.Careerprogressionisalsoquiterare.Theauthorrecommendsthat:

• jobagenciesandrehabilitationcentresprovideeducationaboutthisarea;

• variousmediabeutilisedtoraisedisabilityawareness;

• youngpeoplewithdisabilitycontinuetobeeducatedinmainstreamsettings;

36Chapter210oftheLawsofMalta:PersonswithDisability(Employment)Act.Availableat:http://www.justiceservices.gov.mt/DownloadDocument.aspx?app=lom&itemid=8718&l=137ActNo.XXIIof2015.Availableat:http://justiceservices.gov.mt/DownloadDocument.aspx?app=lp&itemid=26998&l=1

33

• employmentcentresensurethatpersonswithdisabilityarewellinformedregardingpolicies

andservicesavailableinthisarea;

• employersbeheldliableifinterviewvenuesarenotaccessible;

• legalassistancebeprovidedtoemployeeswithdisabilitywhofeelthattheydonotadvance

intheircareerduetotheirdisability;

• moreconsultationbyauthoritiesregardingtheemploymentquotasystemisheld;

• thereisbetterenforcementwithregardstoreasonableaccommodation;and

• advertsrelatedtothejobinterviewsareaccessibletoall.

A.Attard(2017)focusesherresearchonayoungmanwithintellectualdisabilityemployed

withalocalcompany,whilealsointerviewinghisparents,supervisor,colleagues,jobcoachandstaff

from an employment agency. The author likens the journey of employment to the experience of

ridingabicycle,whereoneremovesanyobstaclesthatmaycomeinthelearner’swayandcontinues

to support the individual until they are confident enough to let go and ride independently. The

author states that the way forward should focus more on incentivising employers to offer job

opportunities to persons with disability rather than penalising them for not conforming to

legislation. Findings from this studywere passed on to the Lino Spiteri Foundation38 in the belief

that,althoughthestoryoftheparticipantwithintellectualdisabilityinthisdissertationisunique,its

narrativecanhelpotherpersonswithintellectualdisabilitytofindandmaintainemployment.

Bonello (2015), Camilleri (2010), Zammit (2010) and Bezzina (2005) look at the legal

frameworksencompassingemploymentandpersonswithdisabilityinMalta(withCamilleritakinga

wider approach and looking at how the EU, includingMalta, tackles discrimination in the area of

employment). National and international legal precursors, and legislation subsequent to, the EU

CouncilDirective2000/78/EC39–consideredasthemostimportantinstrumenttheEUhasadopted

inthedisabilityfield–areexplored,aswellasthedirectiveitself,withbothitspositiveaspectsand

limitations. Malta adopted this Directive regarding the disability sector mainly through the EOA.

Camilleri and Bezzina both discuss, among other aspects, direct and indirect discrimination; and

Camillerialso looksatrelevantcasesattheEuropeanCourtofJustice40.CamilleriandZammitalso

discuss the proposal for a new horizontal anti-discrimination directive which has not yet

materialised.Throughinterviews,Zammit,corroboratingJ.Attard’s(2017)findingsdiscussedearlier

in this section, finds that enacting legislation is not sufficient in ensuring that disabled persons38http://linospiterifoundation.org39CouncilDirective2000/78/ECof27November2000establishingageneralframeworkforequaltreatmentinemploymentandoccupation.Availableat:https://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=CELEX:32000L0078:en:HTML40https://europa.eu/european-union/about-eu/institutions-bodies/court-justice_en

34

achieve their right forequal treatment.Despitewriting ten years apart, bothBonello andBezzina

conclude– through interviews andanalysis of data – thatMaltesepersonswithdisability are still

findingvariousbarriers toaccess theMaltese labourmarket.Bonello reports that theseproblems

are furtheraccentuated in thecaseofpersonswith intellectualdisability,mentalhealthproblems

andolderpersonswithdisability.Reasonsinclude:

• lowlevelofeducation;

• lack of physical accessibility (especially transport) – corroborating I.M. Zammit’s (2017)

findingsmentionedearlierinthissection;and

• employers’negativeattitudes.

Thethreestudiesresultinvariousrecommendations,whichinclude:

• thedevelopmentofanEUdisability-specificdirective,protectingdisabledpeopleinallwalks

oflife;

• local legislation to be continuously updated to be fully complaint with European and

internationallegislation;

• thatthedefinitionofdisabilitybethesameindifferentlocallegislations;

• reinforcement of the access of disabled people to justice or conciliation procedures

regarding employment (recalling the general access to justice discussed in the ‘Disability

Rights&Non-Discrimination’sub-section);

• support to disabled persons so thatmore disabled persons can speak out for their rights

(confirmedalsobythefindingsinthe‘DisabilityMovement’sub-section);

• moreandbettervocationaltrainingandprofessionaltrainingofvocationaltrainers;

• further support to employers in providing equal treatment (including reasonable

accommodationandphysicalaccessibilityattheworkplace)todisabledpersons;

• amixtureof lawenforcementofexisting legislationandsoft law initiativestobeobserved

onavoluntarybasis;

• government-fundedschemes toencouragepersonswithdisability tomove fromsheltered

employmentintoopenemployment,ortobecomeself-employed;

• morestatefundingofNGOsworkinginthedisabilitysector;

• more consultation between all stakeholders (government, employers, unions and persons

withdisabilities);

• moreaccessiblepublictransport;

• statisticaldataonthissectortobegatheredandanalysedproperly;and

• moreawarenessraisinginallsectorsofsociety.

35

InformationandComputer-BasedTechnology

Debono (2006) brings to the fore the importance of making effective use of Information

CommunicationsTechnology(ICT)inordertosupportdisabledpeopleinbridgingthedigitaldivide.

Theauthorarguesthatthedigitaldividebetweendisabledandnon-disabledpeoplearisesbecause

disabledindividualsandthosewhosedecisionsbearondisabledpeople’s lifestyles,failtopercieve

theenablingqualitiesofICT.Despitethefactthathisdissertationwaswrittenmorethanadecade

ago, many of Debono’s observations are still valid today, such as the oft-cited fragmentation of

services (see the ‘Families’ section). In order to combat this, the author recommends that a

coordinating body should be set up. The author also recommends that government and private

enterprises cooperate indevelopingbetterpolicy and servicedelivery: a ‘joinedup’ approachhas

already proven to reduce the fragmentation that can create barriers to community participation

(examples include the intiative by Foundation for Information Technology Accesibility (FITA)41

together with (the then) Maltese Council of Arts and Technology, the Education Division, the

Ministry responsible for information technology and local commercial enterprises). Debono also

notes that removing thedigital divide is a cross-cutting issueandwill require leadership, funding,

and the involvement ofmajor business companies.He also recommends that policymakersmust

allowplansandprojectstoevolveorganicallyfromthepeopletheyaimtohelp,andprovidesupport

mechanisms to truly enable the development of sustainable projects. Furthermore, aggressive

awareness initiatives are needed to educate disabled persons who could benefit from assistive

technology, their familiesand friends, serviceproviders,and thepublicaboutassistive technology

available today. Finally, Debono recommends future research to substantiate the effectiveness of

theserecommendations inensuringthatMaltesedisabledpersonscanparticipateasfullmembers

ofsociety,andtoevaluatetheperspecitvesofotherstakeholderslikeserviceproviders,employers

andorganisationswhoseroleistosupportdisabledpersons.

DeMartino(2017)andGatt(2007)bothlookattheroletechnologyintheschoolexperience

(which is discussed in detail in the ‘Education’ section). Gatt explores communication through

technologyofchildrenwithlearningdisabilityandcomplexcommunicationdifficulties.Sheanalyses

thebarrierswhichpreventtheprovisionofofAugmentativeandAlternativeCommunication(AAC)

systems to these children. Through interviews with professionals – including speech and

occupational therapists and special education teachers– and familymembers, it emerges that, at

the timeof reporting,AAC inMaltawas still emergingandwas surroundedby lackof awareness,

inequalityofopportunityandprovision,negativeattitudesandlackoftrainingandfunding.Similar

to what Debono (2006) notes, Gatt also observes that territorialism prevails between different

41https://fitamalta.eu

36

governmentandnon-governmentorganisations,whereinteamsfunctioninamultdisciplinarysetup

whichlackssoundsupportservicesforAACusersandtheirfamilies.Gattnotesthattherealsoseems

to be remnants of the medical model, with funding opportunities for communication aids being

mainly charity based. Respondents in this study call for more collaboration between major

stakeholders and a person-centred approach towards service delivery. The author recommends,

amongothers,that:

• legislativemeasuresareputinplaceinordertoensurethattheEOAandtheEducationAct42

areinlinewiththeUNCRPD;

• anationalAACpolicybedevelopedtoprovideequalityofopportunity;

• AACusershaveaccesstoAACintheclassroom;

• manual signing and other means of communcation are introduced at National Curricular

level;and

• moreresearchiscarriedouttoanalysethebarrierstoactiveparticipation.

Gattsuggeststhatbysuccessfullyovercomingthesebarriers,thebenefitsofAACwillbeexperienced

bymoreMaltesestudentswithcomplexcommunicationdifficulties.

TechnologyfortheclassroomisalsoexploredbyDeMartino(2017),whonotesthatwhile

teachersneed tobeable tounderstandandempathisewith studentswithautism, theyareoften

unprepared for including an autistic student in their class because they cannot fully visualise the

experiencethatthestudentgoesthrough.DeMartinocreatesatool(anappthatcombineswitha

Virtual Reality (VR) headset) in order to enable teachers to experience the studentwith autism’s

experience.Usingnarrativesfromparentsofautisticchildrenaswellasexpertsinthefieldofautism

andlearningwithautism,herprojectfocusesonre-creatingtheclassroomexperienceasperceived

fromtheautisticlearner’sperceptionsthatincludesights,sounds,actionsandinteractions.

Diacono(2015),meanwhile,looksmorespecificallyatinternetaccessforpeoplewithvisual

impairments.Conductinghisresearchwithadults–themajorityofwhomidentifyastotallyblindor

having severe visual impairment and use computers regularly – Diacono observes that Braille’s

standingas theprincipalmeansof reading forpeoplewith visual impairmentshasbeen in steady

decline,whiletext-to-speechtechnologyhas thepotentialofbeinga learningcurve-freesourceof

thepublishedword.Theauthorrecommends,amongothers:

• aone-size-fits-allwebpagestructurefornewsportals;

• diffusionofgovernmentinformationandcommercialwebsite;and

• furtherresearchonrelatedissues.

42Chapter327oftheLawsofMalta:EducationAct.Availableat:http://www.justiceservices.gov.mt/DownloadDocument.aspx?app=lom&itemid=8801

37

Leisure,CultureandSport

This section looks at the often neglected (in research as in services) leisure and sport aspects of

disabled people’s lives in Malta. A recurrent theme emerging from most of the dissertations

discussed in this section is the importance of sport and activities such as performing arts in

challengingthemedicalmodel,which–ashasbeenestablishedfromprevioussections–isstillthe

predominantviewofdisabledpeopleinMalta.Thedissertationsalsolookatbarriersthatdisabled

peopleencounterinaccessingleisure,culturalandsportactivities,notonlyinpeople’sattitudes,but

alsointermsofphysicalaccessibility.

LeisureandCulture

L.Attard(2017)exploresphysicalaccessibilityasakeybarriertodisabledpeopleinMalta.Whileshe

looksmainlyataccessibility inplacesofentertainmentasexperiencedby sixyoungadultsusinga

wheelchair,her findingsand recommendationscanbegeneralised tomanydifferentplaces in the

Maltese islands (asseen inthe ‘Families’sectionbelow).Herstudyconfirmsthatwheelchairusers

experiencemanyobstacleswithregardstoaccessingentertainmentandleisureactivities,andthus

their opportunities to entertain themselves are substantially reduced, to the detriment of their

overall quality of life. Such restrictions end up influencing negatively their opportunities for

socialising with other (disabled and non-disabled) people, fostering new and possible significant

relationships, and improving their generalwell-being. Thismeans that inaccessibility is onemajor

issuewherethewheelchairuserpopulationisnotenjoyingthesamerightsasthoseenjoyedbythe

restoftheMaltesepopulation.This issuethusneedstobeaddressedmoreaggressively,andhere

theauthorrecommendsthatsociety implements theprinciplesofUniversalDesign–whichwould

benefitbothdisabledandnon-disabledpeople–andadisabilityawarenesscampaigntohelpsociety

graspabetterunderstandingofdisabilityissues.

AculturalactivityexploredbyBaldacchino(2016)isdancing.Shelooksatthedancedevising

process of ten young dancerswith learning disability at theOpeningDoors Association43. Besides

learningtodance,theseadultsarealsoabletoexpressthemselvesthroughmovementwithmusic,

emphasingtheir role in thiscreativeprocess.Suchanapproachchallengesvariousmisconceptions

aboutintellectualdisabilitieswhicharebasedonthemedicalmodelofdisability.Theseperformers

areveryeagertolearn,share,beinvolvedandexpresstheirownpersonality,emphasisingthatthey

needmorethanjusttherapeuticservicesthataddresstheirphysicalneeds.

43http://openingdoors.org.mt

38

Cini(2017)looksathowthreeboyswithsensoryprocessingdifficulitesviewandparticipate

inplayandleisureactivities.Themainleisureactivitiesoftheseboysarefootball,karateandjudo,

withotheractivities includingtheuseofcomputersandother technologicalequipment.Similar to

Psaila’s (2015) findings–discussed in the ‘Children’section–Cini findsvariances inchildren’sand

adults’ perceptions: while therapists view participation in these leisure activities as ideal for the

children’s sensory processing needs, children participate in play and leisure purely for enjoyment

and learning purposes. Families also tend to limit engagement in unstructured play such as in

playgrounds,oneof thereasonsbeingthe importancethatMaltesesocietygives toschoolingand

advancements in career.Anotherbarrier to thisparticipationare theattitudes (a recurring theme

throughout the majority of dissertations reviewed here) that these children face in these

environments. Cini recommends that children are listened to more, and that more awareness is

raisedabouttheneedsofthesechildrenamongstcoaches,teachersresponsibleforleisureactivities

andotherparents.Theauthortranslatedthesefindingsintotwoleaflets,oneaddressedtoparents

andtherapists,andtheothertoleisureentities.

Sport

Asnotedbyoneoftheauthorswhosedissertationisdiscussedinthissection,veryoftentheissueof

sport and persons with disability is not given its due importance (Mamo, 2017); and despite the

physical, social and pyschological health benefits that sport provides, Maltese persons with

disability’s participation in sport is extremely low (Cachia, 2017). The two dissertations discussed

here explore both the benefits of sport in disabled people’s lives, but also the the barriers

encounteredaswellasissuesrelatingtotheidentitiesofthedisabledathletes.

Cachia(2017)delvesintotheexperiencesoftwoswimmerswithaphysicaldisabilityandtwo

wheelchairbasketplayers, togetherwiththoseoftheirnon-disabledcoaches,andfindsthatthese

disabled athletes face a number of barriers,mostly due to the negative disability discourse used

within the personal tragedy andmedical model of disability still prevalent inMaltese society, as

confirmed by various other dissertations explored in this review. Other barriers are inaccessible

transport, poor planning of sporting activities, and limited financial resources. Interestingly, the

research participants have conflicting perceptions of disability: on one hand, sport activities help

these athletes develop a positive image of themselves – an aspect also noted byMamo (2017) -

enabling them to become role models (not only in sport but also in other spheres of life) and

disabilityadvocates.Ontheotherhand,successinsportactivitiesbringsaboutthefeelingofbeing

‘normal’.Indeed,theconceptof‘normalcy’isstilldominant,especiallyinthecoaches’attitudeswho

see their athletes as ‘normal’ persons.Mamo,who looksat the storyof a twelve-yearold female

39

withintellectualdisabilityparticipatinginsportingactivitiesbothinSpecialOlympicsandalsoinnon-

disabled mainstream competitive sport, also notes that the athlete questions her identity as a

disabled person. Mamo, too, notes the attitudes of coaches and other non-disabled persons in

power, who take on the attitude of “we know what is best”; while society’s negative attitudes

implies that the athlete can only succeed with other disabled athletes. The author ultimately

concludesthatalthoughhardwork,commitmentandresilienceareessentialforadisabledpersonto

succeedincompetitvesport,thiscouldnotmaterialisewithoutthesupportoftheparentsandthe

coaches. Meanwhile, Cachia recommends that sport programmes should be developed in

consultation with disabled athletes and their coaches; and that more promotion of these

programmesandsportawarenessiscarriedout.

IntimateRelationshipsandSexuality

Asnotedbytheresearchparticipantsofoneofthedissertationsdiscussedinthissection,beinginan

intimate relationship helps peoplewith disability satisfy other human needs, such as the need to

belongandtheneedtofeelemotionallyclosetoothers(Debattista,2015).

IntimaterelationshipsandsexualityarethethemesexploredbybothDebattista,mentioned

above, and E. Zammit (2017). While the latter looks at the experiences of adults with mild to

moderate intellectual disability, the former extends his research to people with physical, visual,

hearing, intellectual and learning impairments. Both studies find that people with disability face

obstacles in sexuality and intimate relationships (including sexualexpression). Theseobstaclesare

due to societal stigma and stereotypes and internalised ideas regarding disability and sexuality,

especially when it comes to people with intellectual disability. Both authors cite cultural and

religious beleifs, including stereotypical ideas of family life and marriage, as well as the tragedy

model of disability, as some of the barriers that disabled people face in this area. This is further

compounded by inaccessible (or lack of) information and sexual education, as well as lack of

preparation from parents and caregivers towards expressing sexuality and developing safe socio-

sexualrelationships.Otherfactorscitedbytheauthorsincludephysicalinaccessibility,lackofprivacy

andlackofopportunitiesforsocialinteraction.ZammitandDebattistarecommend:

• betterawarenessraisingactivitiesinvolvingtheactiveparticipationofpeoplewithdisability;

• education, easily accessible information (on sexuality and reproduction) and professional

supportforyoungadultswithdisability;and

• training and education for parents and professional caregivers so that they are well

equipped not only in supporting disabled people in expressing their sexuality, but also in

40

promoting sexual health and autonomy and eliminating overprotection (a theme which

comesout inmanydissertations, suchas those found in the ‘Educationand ‘Personswith

IntellectualDisability’sections).

Debattistaalsoproposes thereviewingof sexualeducationguidelines toensure thatpersonswith

disability are not shown negatively, together with a revision of legislation discrminating against

personswithdisabilitiesintheareaofmarriage.

41

Services

CommunityServices

AnevaluationofthecommunityservicesavailabletopersonswithdisabilitiesinMaltaiscarriedout

byVella(2017).Inherdissertation,VellainvestigateswhethertheservicesofferedbytheCommCare

Assessment Unit44 of the Active Ageing and Community Care Directorate45 are truly catering for

disabledserviceusers’needs.Usingbothqualitativeandquantitativemethods,theauthorfindsthat

serviceusersareonthewholesatisfiedwiththeoverallcareandthestandardsofserviceprovision.

However,twoimportantshortcomingsemerge:thefrequencyofserviceprovided(e.g.inthecaseof

physiotherapy,occupationaltherapyandhomehelpservice);andthetimingofcertainservicessuch

as nursing and care. Other issues noted by this study include the communication both between

professionalsandserviceusers(anaspectwhichalsocomesinthe‘ResidentialSettings’section),as

well as interdisciplinary communication; variousmisconceptions about these services; and, above

all, the need of continuity of care. The findings of Vella’s study thus show that there is room for

improvementinthedeliveryoftheseservices,bothatpolicyandthepracticallevels:specificneeds

ofthepersonswithdisabilityarenotalwaysbeingmet.Theauthorrecommendsthatare-evaluation

of these services is undertaken. The improvements that the study suggests do not only include

changes in the service provision itself, but also structural changes to eliminate external barriers

which are hindering people with disability from fully participating in their community. These

recommendationsincludetheintroductionof‘age-adaptedliving’–meaningcommunityresidential

houseswhichalso cater forolderpeoplewithdisability–anddeinstitutionalisation,meaning that

servicesshouldnotbeprovidedininstitutionsbutbecommunity-based.

ResidentialSettings

Darmanin(2014)explorestheexperiencesofadultswithintellectualdisabilityinresidentialsettings

inMalta,wheretheparticipantsexpressappreciationthattheyhavecontactwithmembersoftheir

families,withsomesayingtheymiss their families.Furthermore,sincemostof theparticipantsdo

not have friends outside the residential homes, they form strong friendshipswith other residents

andcarers(whilesomeofthosewhoareemployedalsosaytheyhavefriendsattheirplaceofwork).

Indeed,fewparticipantshavecontactwiththeoutsideworldandmostareconfinedtoparticipation

inactivitiesorganisedfordisabledpersons.Darmaninhighlightsthatsomeparticipantsfeelthatthey

are not listened to when they complain or make suggestions, and that they have difficulty44https://activeageing.gov.mt/en/Pages/CommCare-Unit/CommCare-Unit.aspx45https://activeageing.gov.mt/en/Pages/Welcome-Active-Ageing.aspx

42

communicating with foreign carers. Furthermore, only a few particpants say that they are

encouragedtoparticipate in theday-to-dayrunningof thehome,or in theadministrationof their

finances.Theauthorthusrecommendsthat:

• anevaluationofthepracticesusedinthesegrouphomesinordertoensurethattheneeds

andconcernsofresidentsaremetiscarriedout;

• guidelinesforgrouphomestoeliminatedisablingpracticiesaredrawnup;

• residentsparticipateincommunityactivities;and

• aconsultativecommittee foreachgrouphome issetup, tobechairedbyan independent

personandformedbyresidentsandstaff.

[Reviewer’sNote:Whilestandardsforresidentialservicesforpersonswithdisabilitywerepublished46

in2015 (after thewritingofDarmanin’sdissertation)and includedthesettingupofaconsultative

committeeforgrouphomes,thereisnolegalmechanismtoensurethattheyareadheredto.]

Dalli (2017),meanwhile, looksat theexperiencesofpeoplewhosespouseswithdementia

areadmitted intoacarehome.Themajorityof the researchparticipantsdidnot choose toadmit

their spouses – it was rather a decision taken by professionals – thus most of them were not

preparedforsuchamoveandexperiencedfeelingssuchasloneliness,emptiness,andhelplessness.

At the same time, however, they also experience relief from the stress caused by their spouses’

disabilities. The research participants also report their efforts tomaintain a connectionwith their

institutionalised lovedonesthroughcontinuedspousalcaring,despitethechallengesposedbythe

dementiaitself,physicalseparationandhealthcareprovision.Withregardstotheresidentialsetting,

albeitadifferentonethanthatexploredbyDarmanin(2014),Dallireportssomesimilarfindingsand

thusproposessomerecommendationswhichcutacrossboth typesof residential settings. Indeed,

Dalli reportsthatparticipantshavemixedopinionsonthefacility’scapacityto involvetheminthe

care of their beloved ones, with some complaining about the lack of communication between

participantsandstaff,andthehighturnoverofstaff.Otherstalkhighlyofthestaff’sattentiveness

anddiligenceandalsopraisethefacility’scommitmenttoprovidethemwithvariousopportunities

torelatewiththeirspouses.Theauthorendswithanumberofrecommendations,whichinclude:

• betterpreparationofthespouseonthedecisionstobetaken;

• bettercommunicationbetweenstaffandrelatives;

• moreemotionalsupportandcounselling;

• person-centredandrelational-centredcarefortheelderly;and

46Thesecanbefoundhere:https://family.gov.mt/en/DSWS/Pages/Disability/National-Standards-for-Residential-Services-for-Persons-with-Disabilities.aspx

43

• ongoingevaluationofcarehomes’regulationsandpolicies.

PsychologicalandCounsellingServices

Camilleri Zahra (2014) notes the need of counselling in disabled people’s lives and the fact that

disabled people as a client group are often avoided by counsellers. This section looks at the

counsellingprofession in relationtodisability fromvariousaspects, including ineducationsettings

(whileeducationingeneralisexploredinthesection‘Education’).

Camilleri Zahra (2014) finds that the social construction of disability among counsellors is

influenced by mainly three factors: international and national politics of disability; counsellors’

professional training; and cultures of practice. These result in contradictory disability discourse in

thecounsellingprofession,termedbytheauthoraslookingatdisabledpeopleas“allthesamebut

different.”Thecounsellorsparticipatinginherstudyfinddifficultyinexplainingtheirunderstanding

ofdisability,ontheonehandclaimingthatdisability isnot inherenttothe individualwhilstat the

same time claiming that it is the disabled person’s responsibility to overcome their impairments.

Despitetheirgoodintentions,theylackagraspofthenauncesofdisability.Onapositivenote,they

arereadytoreceivefurthertraininginthisarea.Theauthorconcludesthattheirtrainingdoesnot

match thedevelopments that tookplace in disability politics, and thus recommends thatMaltese

counsellorsreceivetrainingindisabilityissues.

Similarly,Portelli(2016),whoexplorestheexperiencesof–andspecificallythepsychosocial

effectsofdyslexiaon–youngadultswithdyslexiaandcounsellorsworkingwith secondary school

students, reports that his participants recommend that counsellors’ training should include

preparationondyslexia.Hisfindingsrevealfrustrationsduetotheenvironmentthatliving/working

with dyslexia provokes in both students and professionals. Research participants emphasise that

dyslexiacannotbeaddressed inavacuum: theperson’scontextandpersonalityare important;as

well as the fact that the counsellor’s role is not only related to the counselling room: advocacy,

educationandaproactiveapproacharerequired.Participantsalsorecommendthatcounsellorsare

activeatpolicyandadvocacylevelswithotherstakeholders.

The importance of psychologists in education settings with childrenwith disability is also

shownbyCortis(2014),whofindsthatthemajorityofprimaryschoolteachersparticipatinginher

studyandteachingstudentswithADHDinstate,churchand independentschoolsfeeltheneedto

consultthepsychologistwhenworkingwiththesestudents.However,veryfewofthemreportthat

such consultations actually occur. Cortis’ findings show that themajority of participating teachers

feel theneed formorepsychological serviceswithin their school. In tandemwithPortelli’s (2016)

recommendations,Cortis concludes that thepsychologicalprofessionneeds tobemoreproactive,

44

and recommends that psychologists promote more their roles and put more emphasis on

collaborativepracticeswithteachers.

Perera Vega (2014) confirms another of Camilleri Zahra’s (2014) observations: that

counsellors tendtoavoidpeoplewithdisability.She looksatcounsellingservices forchildrenwith

autismand finds that they tend toprefer creativeandnonverbalmodalities in therapy.Thestudy

highlights the importance of communication for effective therapy and the need to increase

counsellingservicesforbothchildrenandtheirfamilymembers(emphasisingthetheparents’need

foremotional support, asdiscussed in the ‘Parents’ sub-section).Group therapy is found tobeof

benefittobothchildrenwithautismandtotheirparents,helpingthemtorealisethattheyarenot

facing these challenges alone. (Similar findings are foundwith regards to siblings of childrenwith

disability,asdiscussedinthe‘Siblings’sub-section.)LikeCamilleriZahra’sstudy,thisstudynotesthe

need formore awareness on autism amongst counsellors and therapists. Bugeja (2014) too finds

thatcounsellingwithpeoplewithautismwouldbemorebeneficialifittakesanindividualapproach

that values difference, rather than the traditional arrangement.Meanwhile, she reports that the

professionals whom she interviews and who work with autistic clients view counselling autistic

clientsmoreasaformofcoaching/mentoring.

Counselling is also explored in relation to persons with physical disability by C. Farrugia

(2016).Acquiredphysicaldisability isdiscussed fromvariousaspects indifferent sections (see the

‘Families’ and ‘Youth’ sections), but Farrugia explores the experience of an amputation and its

impact on the self-identity of the person concerned. The author looks at various related issues

including:

• amputationasanemotionally-chargedexperience;

• issueswithcontrol;

• thetraumaticnatureoftheexperience;

• re-negotiationofidentity;

• theupsanddownsofadjusting;and

• theroleofprofessionals.

The role of resilience (which is discussed further in the ‘Families’ section) and the fact that the

experiences,whilehavingcommonalities,arealsoveryindividual(anotherrecurringtheme),emerge

fromFarrugia’sstudy.Withregardstheprocessofadjustment,theauthorconfirmsfindingsbyother

authorsdiscussedinthisreview,thatis,thatitisnothelpedbyattitudinalandphysicalbarriers.The

authorrecommends:

• moresocialawarenessondisability;

• thathealthisincludedasanareaofspecialisationinthetrainingofcounsellors;and

45

• thatcounsellorsareemployedwithinthehealthcaresetting.

46

StagesofLife

Children

Childrenwithdisabilityarethetopicofthetwodissertationsdealtwithinthissection(however,the

topic is also explored from other aspects in other sections, such as the ones on education and

leisure, culture and sport).While childrenwith disability are also the topic of disability studies in

general, there are specific issues which pertain solely to children and which merit much-needed

researchinthisregard.StudieslikethatofBartoli(2017)andPsaila(2015)enablechildren’svoices

andnarrativestoemergethroughtheirresearch.

Bartoli(2017)writesaboutthestoriesofthreeboyswithhighfunctioningADHDandautism

andidentifiesthemeaningofsuccessfulparticipationforthem,whichcomprises:

• afeelingofbelongingamongstfriends;

• beingabletoperformatasktoasatisfactorylevel;and

• havingadegreeofautonomyindifferentactivities.

All three children have positive experiences of inclusion; however, while social acceptance is the

mainaspectthatmakesthemfeel included, it isthesameattitudes(albeitnegativeones)thatare

considered by these children as themain barrier to inclusion. Ultimately, Bartoli, highlighting the

individuality of each child and the fact that “there is no single ‘most effective’ method for the

inclusionofallchildren,eventhosehavingsimilarimpairments”arguesforaneeds-basedapproach

which targetsa child’s specific requirementsand learning styles,whilst complimentingaUniversal

Designframework.Theauthoralsorecommends:

• collaborativegroup-basedlearningatschool;

• disabilityequalitytrainingbyorganisationsofdisabledpeople;and

• theinclusionofchildrenwithspecificimpairmentsinlocalsupportgroups.

Psaila (2015) narrates the story of a boy with spina bifida who uses a wheelchair, and

observes that the child’s outlook of life is more positive than that of the adults in his life. His

priorities differ from those of these adults and are very often overlooked: for him, the most

important things are physical accessibility; the freedom to identify himself as equal to his school

peers;andtoassumetheroleoftheeldestbrotherinthefamily.Ontheotherhand,theprioritiesof

theadultsinhislifearethathewalks,attendshisphysiotherapysessionsanddoeswellatschoolin

ordertocompensateforhisimpairment.Theinformationgeneratedthroughthisstudywasusedto

enablethechildtocreateabookletdepictingtheboy’s lifewhichcanbedisseminatedtoschools,

NGOsandother institutions. Inthisbooklet,thechildemphasisesthefrustrationhefeelswhenhe

encountersphysicalinaccessibility.

47

Youth

Three dissertations deal specifically with young persons with disability, albeit from different

perspectives.Garland(2015)looksattheimpactofthefamily,thechurchandthestateinMaltaon

young disabled people’s aspirations. Through interviewswith four young adultswith physical and

hearing impairments, parents, a politician and amember of the clergy, the study shows that the

formationoftheidentityoftheseyoungpeoplewithdisabilityaretheresultoftheirexperiencesin

education,theirfamilylifeandsocietyatlarge.Allofthemstrivetoachieveanon-disabledidentity–

whichdependsheavilyonapositiveeducationalexperience–withoutrefusingtheirdisabledone.

The parents,whose expectations for their children are high, report that they had to be assertive

(especiallywithmedicalprofessionals,whowererathernegativeaboutthefutureoftheirchildren).

Theparticipantsalsoassociatethechurchwiththeprevalentsocietalattitudetowardspersonswith

disability,thatis,thecharitableapproach;whileviewingthestateasbeinginstrumentalinproviding

the necessary support services to achieve independence, to enforce relevant legislation and to

achieveaccessibilitythatenablesthemtofullyparticipateinsociety.Theauthorthereforeconcludes

thatMaltesesociety, influencedbythefamily,thechurchandthestate, influencestheaspirations

held by young adults with disability. Finally, Garland makes a number of recommendations that

include:

• moreawarenessofservicesavailable;

• thedevelopmentofaChurchDisabilityPolicytomoveawayfromthecharitableapproachto

disability;[Reviewer’sNote:Itistobenotedthatthechurchhasadisabilitypolicy47whichis

currentlybeingupdated].

• consultation with disabled people by their representatives on the various Government

boards[Reviewer’sNote:ThisconcernhassincebeguntobeaddressedthroughActNo.VIIof

201548];

• betteraccessibilitytoculturalvenues;and

• incentivesfordeveloperstobuildnewhousingunitsthatarephysicallyaccessibletoall.

Given the influential role that the church plays in young disabled people’s lives inMalta,

DarmaninCarbonaro’s(2015)dissertationisrelevantinthatitstudiesthewaysinwhichpeoplewith

disabilitycanbefullyintegratedwithinparishesinMalta.FollowingtheMalteseDiocesanSynod,Id-

Dar tal-Providenza49 introduced the Special Religious Development (SPRED)50 method for its

47Arċidjoċesita’Malta(2006)LejnKnisjadejjemaktarinklużiva:is-sehemtal-persunib’diżabilitàfil-ħajjaul-ħidmatal-Knisja.Floriana,Malta:Arċidjoċesita’Malta.48ActNo.VIIof2015.Availableat:https://parlament.mt/media/37392/act-vii-various-laws-personswith-disability-membership-in-various-entities-act-2015.pdf49https://www.dartalprovidenza.org

48

residentsbutthisdidnotreachdisabledpeopleintheparishes.Theauthorrecommendsthesetting

upofanAdaptiveCatecheticalMinistrywithintheSecretariatforCatechesisintheMalteseDioceses

to supportparishes tobetter includepersonswithdisabilities and tobetterprepare them for the

Sacraments.

The relationship between people with disability, or their relatives, and professionals

mentionedbyGarland(2015)isathemewhichalsocomesoutindeBono’s2015dissertationonthe

livedexperiencesofyouthwhoacquireaphysical impairmentandhavetoadapt toanewwayof

life.Oneofthethemesthatemergeisthefactthattheparticipantsfeelthattheyaretheexperton

their experiences, rather than the professionals, and here they (especially those who had also

receivedhealthtreatmentabroad)alsocriticise localhealthservices.deBonoexploresthechanges

that were brought about in the participants’ lives: while they all worked towards becoming as

independentaspossibleandtoestablishasenseof‘normality’ intheirlives,anemergingthemeis

the great changes brought about in different aspects of their lives, including at home, in

employment, and in day-to-day activities. However, they felt that life had to go on, with their

relationships, their interests and their dreams. Among other themes the author explores, once

again, the issue of the negative views of disability by the public (discussed in various sections

throughout this review) comes out, although some express the view that these attitudes are

improvingwithtime.Basedontheseemergingthemes,theauthorrecommends:

• disabilityawarenesscampaignshighlightingthelivedrealityofdisabledpersons;

• lifeworld-led51servicesinthehealthsectorandotherareas;and

• betterstatisticaldataaboutdisabilityinMalta.

Families

Thedissertationsexploredinthe‘ResidentialSettings’section(andinothers)touchupontheroleof

relativesindisabledpeople’slives.Thissectionbringsoutmoreindetailtheexperiencesoffamilies,

parentsandsiblingsofpersonswithdisabilities.

FamiliesandCouples

The threedissertationsdiscussed in this sub-sectionexplore the resilienceof families andcouples

whohavememberswith various disabilities.However, the experiences of families of peoplewith

50https://www.dartalprovidenza.org/?p=666551AsdeBono(2015)explains,the“lifeworldiscomposedofbeingabodyinspace,aselfintimeandlivingwithothers.”Throughvariousrelatedstudies,theauthorexploresindividuals’lifeworldsbeforeandaftertheonsetofimpairment.

49

disability are also discussed in other sections, notably the ‘Persons with Mental Health Issues’

section.

Xerri (2017), exploring the experiences of a family with two disabled children (one with

physicalandonewith intellectualdisability),citestwomain importantthemesemanatingfromhis

study:thatofthelackofphysicalaccessibility(especially inhousing),whichoftenresults in lackof

inclusion; and the lack of cooperation between service providers (both governmental and non-

governmentalones),whichoften leads to framgentedand inacessible services.A recurrent theme

which emerges throughout different dissertations dicussed in this report (see, for example, the

‘DisabilityMovement’sub-sectionand‘IntimateRelationshipsandSexuality’section)istheconcept

ofpity towards these familiesandat the same time the lackof sensitivity towards theneedsand

feelingsofthedifferentfamilymembers.

Schembri Lia (2016; 2012), on the other hand, explores the resilience of several families

(2012)andheterosexualcouplesofwhomonemember(inthecaseofcouples,thefemalepartner)

has acquiredaphysical disability (2016). Inher first study, the author looks at theexperiencesof

differentmembersofthefamilieswhogothroughprocessessimilartobereavement(aconceptalso

noted by Bugeja (2014)who, as discussed in the ‘Psychological and Counselling Services’ section,

looksatautism), sometimesbeingoptimisticand finding thenecessary strength,while sometimes

finding their resilience withering. She reports that although there are similarities of experiences,

eachfamilyandeachmemberdevelopdifferentmethodstocopeasbestastheycan.Withregards

tocouples,SchembriLia (2016) reports thatcopingpost-disability isbroughtaboutbymutualand

reciprocal patterns of interaction initiated and maintained within the couple relationship but

influenced by the socio-cultural context. These processes, over time, limit the difficulties

experiencedbybothparties(Theissueofdealingwithacquiredphysicaldisabilityisalsodealtwith

in the ‘Youth’sectionandthe ‘Parents’sub-section,albeitmainly fromthepersonwithdisability’s

perspective.)

BothSchembriLia(2016;2012)andXerri(2017)makeanumberofrecommendationstobe

taken into account when providing services for families of people with disability. The former

emphasisestheneedformoreservices(includingpsychologicalones)thatarenotonlypersonalised

but also family-inclusive, in order to further the health and growth of the family as a whole.

MeanwhileXerrimakesanumberofpracticalrecommendationssuchas:

• the establishing of a keyworker as a point of reference to the family with children with

disabilitytocoordinateandaccesstherequiredservices;

50

• thepossibilityofgettingservicesfromdifferentorganisationsaccordingtotheneedsofthe

disabled child, rather thanbeing forcedwith a ‘bundle’ of services from the same service

provider;

• bettertrainingofpersonnelworkingwithdisabledchildrenandtheirfamilies;and

• astudytoensurebettercoordinationbetweenthedifferentserviceproviders.

Parents

As noted in the previous sub-section and also by the author (Mifsud, 2017) of one of the

dissertationsdiscussedhere,whenachildisdisabled,thewholefamilytendstobedisabledthrough

socialbarriers,negativeattitudesand theway theneededservicesaredelivered.This sub-section

linkstothepreviousoneinthatitlooksatspecificmembersoffamilieswhichincludepersonswith

disability,thatis,parents.Whileonedissertationlooksatparentswhoarethemselvesdisabled,the

other three dissertations look at the experiences of parents (sometimes having a disability

themselves)ofchildrenandadolescentswithdisability.

Gauci’s (2017) research explores the lived experiences of Maltese parents with Multiple

Sclerosis(MS),andexploressuchthemesas:

• theexperienceoflivingwithMS;

• parentingroles;

• childrenasablessing;

• concernsaroundthechildren’swellbeing;and

• theavailabilityofsupport.

Although some of the lived experiences of these parents are comparable, each experience – as

discussedbySchembriLia(2012)intheprevioussub-section–isuniqueinitsownway.Theresearch

participantsthemselves–likemanyresearchparticipantsinotherdissertations–recommend:

• betterpublicawarenesscampaignsbothwithregardstoMSspecificallyandtodisability in

general,inordertoimproveattitudestowardsdisabledpersons;

• addressingtherealitiesoflivingwithMS;

• developingthenecessarypolicies;and

• ensuringthatthespecificservicesneededbythesepersonsareavailable.

Mifsud (2017), looking at the experiences of parents (some of them having hearing

impairmentthemselves)ofchildrenwithhearingimpairments,findsthatwhileservicesdoexist,the

parentsemphasisethatitisdifficulttoaccessthemwithoutproperinformation.Furthermore,these

parentsrecognisetheimportanceofmeetingotherparentstodiscusstheseissuesandtofeelthat

51

theyarenotalone,henceanonlineparent-to-parentgroupwassetuptoprovideinformalsupport

totheseparents.Inaddition,parentsputforwardotherrecommendations:

• that children are diagnosed as early as possible in order to help children’s language and

socialdevelopment(the importanceofthediagnosisand itsrole inhelpingparentsfind“a

sense of closure” is also noted by Bugeja (2014), whose dissertation is discussed in the

‘PsychologicalandCounsellingServices’section);

• thathearingscreeningisintroducedtoallnewbornchildreninMaltaandGozo;

• thatprofessionalcounsellingbemadeavailabletoparentsofchildrenwhoarediagnosedas

havinganimpairment;

• thatservicecoordinatorsareengagedtoprovideparentswithunbiased informationabout

thevariousoptionsavailable,thushelpingparentsfeelmoreincontrolandempoweredto

makeinformedchoices;and

• thatanationalstrategyisdevelopedforthissectorinordertoensurethebestqualityoflife

tothesechildrenandtheirfamilies.

Finally,tomeetinformationneeds,parentsrecommendthepublicationofaleafletcontainingallthe

necessaryunbiasedinformationwhichcouldfacilitatethisprocess.Adraft leafletwasdrawnupas

partofthisdissertationandtheparticipantswereaskedtoevaluateit.[Reviewer’sNote:Theleaflet

withnecessaryinformationforparentsofnewlydiagnosedchildrenwithahearingimpairmentfound

inthisstudywaspublishedin2018.]

Dimech (2014) and Cassar (2014) both look at mothers of children with disability. While

Dimech compares mothers’ narratives following the birth of their disabled child across different

countries, including Malta, Cassar looks specifically at mothers’ constructions of their childrens’

autism.

Dimech (2014) discusses different themes that emerge from the mothers’ narratives,

including the upheaval that the birth brought about in their lives, and how they dealt with this

suddenchange.Otherthemesincludetherelationshipthesemothersexperiencewiththedifferent

medicalprofessionals (seeother sectionsdiscussing thisaspect, suchas the ‘Youth’, ‘Personswith

Mental Health Issues’, ‘Residential Settings’ and ‘Community Services’ sections), with other

membersoftheirfamilies,withmembersofsocietyatlarge,withthevariouseducationalinsitutions,

and with their offspring. Dimech’s study also brings out the way that specific norms (such as

‘perfection’ and ‘normality’) very often end upmarginising peoplewith disability and their family

members (recalling also the concept of ‘normality’ discussed in the ‘Sport’ sub-section). These

findingsarerelatedtoCassar’s(2014),whoreportsthatthemothers’firstcontact(relatedtotheir

52

childrenwithautism)iswithmedicalprofessionals.Atfirst,themotherspercievedtheirchildrenas

differentfromthe‘norm’,andlookedtothemedicalprofessiontogiveanameandsolutiontotheir

children’s autism. Thus diagnosis was followed by attempts to medically remove their sons’

difference,mainlythroughrehabilitationtherapies(aprocesswhichisconfirmedbyBugeja(2014)in

her dissertation on autism, discussed in the ‘Psychological and Counselling Services’ section).

Eventually, the mothers started embracing the social model of disability, acknowledging their

children’s personhood beyond their autism traits, and the fact that society discriminates against

thembecauseoftheirdisability.Theychallengetheconceptof‘normality’whilstworkingtoensure

thattheirchildren’srights,especiallyfortherequiredservices,aremet.

Siblings

Theoftenunheardvoicesandstoriesofsiblingsofpeoplewithdisabilityareexplored inthethree

dissertationsdiscussed in this sub-section.While twodissertations lookat adults siblings, another

oneexploreschildren’sexperiencesassiblings.

Vella Gera (2017) – who looks at children whose siblings have cerebral palsy, visual and

hearing impairments,DownSyndrome,autismandADHD–notes theuniqueconcernsandsibling

relationships of these children. Exploring the siblings’ variety of experiences and emotions (both

negativeandpositive, suchas resentment,pride,protection), theauthoremphasises theneed for

siblingstosharetheirexperiencesandtohaveaccesstoinformationandsupport.Indeed,VellaGera

writesaboutthesiblings’need:

• formoreknowledgeabouttheirsibling’simpairment;

• tosharetheirexperienceswithothersinasimilarsituation;and

• tohavemorecommunicationwith,andattentionfrom,theirparents.

Theauthorrecommendsthatsiblingssupportgroupsbeputinplace.

[Reviewer’s note:While Aġenzija Sapport52 provides sibling support groups for adult siblings; and

Equal Partners Foundation53 intermittently organises sibshops (a type of children’s sibling support

group),therestillseemstobeaneedformoresupport.]

The need for support, as well as the need for attention, from parents, also come out in

Cortis’ 2017dissertationwhich looks at adults siblingsofpeoplewith complexdependencyneeds

andMaidani’s2013onewhichalsolooksatadultssiblingsofpeoplewithdisability.Theparticipants

inCortis’studytalkaboutfindingalternativemeansofcommunicationwiththeirdisabledsibling,as

wellas–whilerecognisingtheneedfortheirparentstodedicatemoretimetotheirdisabledsibling

52https://sapport.gov.mt53http://www.equalpartners.org.mt

53

–moreattentionfromtheirparents.Asadults,theyfeelcomfortableaboutthefactthattheyhavea

disabledsibling,butthiswasnotsowhentheywereyoungandlongedfor‘normality’.Similartothe

findings in Vella Gera’s (2017) dissertation discussed above, the siblings also feel that they

developedanumberofpositiveattitudes(suchasbeingcaring,responsible, independentandself-

sufficient) due to their experiences. BothCortis andMaidani find that the experienceof having a

sibling with disability – while having common aspects (such as pride and embarassment) – also

differsaccordingtotheindividual(forexampleintermsoftheirinvolvementwiththecareoftheir

disabled sibling). Maidani emphasises the individuality of experiences both of siblings and other

familymembers,recallingSchembriLia’s(2012) findingsasdescribed inthe ‘FamiliesandCouples’

sub-section andGauci’s (2017) in the ‘Parents’ sub-section. Significantly, both Cortis andMaidani

report that participants feel a certain amount of responsibility and fear about the future of their

disabledsiblingaftertheirparents’death,anissuewhichtheydonotfeelmuchinvolvedindecision-

wise,andonetheyfinddifficulttodiscusswiththeirparents.Finally,theparticipantsexpresstheir

needforservices,especiallypsychologicalones(whichisemphasisedbybothSchembriLia’s(2012),

aswell asMifsud’s (2017)dissertationdiscussed in the ‘Parents’ sub-section),which they feel are

lacking.This confirmsVellaGera’sobservations that support services for siblings–whoultimately

alsosupporttheirdisabledsiblings–arelackinginMalta.

54

Impairments

TheDeafCommunity

Theexperiencesandneedsofparentsofchildrenwithhearing impairmentswerediscussed in the

‘Parents’ sub-sectionearlier. Thepresent sectionexplores the general experiencesof peoplewith

hearing impairments. Inher2017dissertation,Portelliexplorestheparticipation incommunity life

ofMalteseDeafadultswhouseMalteseSignLanguageasamainmodeofcommunicationandform

a Deaf micro-community within Maltese society. Portelli studies the participants’ aspirations for

theirfutureinMalta,bothonanindividuallevelandalsoasaculturalandlinguisticminoritygroup,

andconcludesthatDeafpeople inMaltaaremarginalised individuals facingvariousbarrierstofull

participationintheircommunities:suchbarriersarenotonlytoinformationandcommunicationbut

also include attitudinal ones. Portelli examines issues which Deaf adults encounter within their

family,among theirpeers,with theircolleaguesandwithinothersocial situations,aswellasDeaf

people’s involvement in areas like education, employment and service provision. The author also

delves into policies that impact on the involvement of Deaf people and argues that in order to

ensurethatDeafpeoplearefullyincluded,everymemberofsocietyneedstodohisorherpart.The

author’srecommendationsinclude:

• theuseofDeafadultsasrolemodelsforlanguagelearningandDeafidentity;

• professionalsupporttoparentsofDeafchildren;

• morequalifiedsignlanguageinterpreters;and

• moreaccessibleTVprogrammesthroughsub-titlesand/orsignlanguageinterpretation.

PersonswithIntellectualDisability

While intellectualdisability is lookedat fromdifferentpersepctives inothersections (see ‘Leisure,

Culture and Sport’ section), one dissertation (Bezzina, 2013) deals with people with (mild to

moderate) intellectual disability in general, while another (Darmanin, 2014) explores peoplewith

intellectualdisability’slivesspecificallyinresidentialservices.Duetotheimportanceofthistheme,

thelatterdissertationhasbeenplacedinaseparatesection(seethe‘ResidentialSettings’section).

However,somecommonsub-themesarefoundinbothdissertations, includingtherejectionof,or

non-identificationwith, the label of intellectual disability by someof the researchparticipants; as

wellasdifficultiesinaccessingandusingpublictransport.

The aim of Bezzina’s (2013) dissertation is two-fold: it explores the use of participatory

methodswith peoplewith intellectual disability, and seeks to investigate the impediments in the

livesofpeoplewithintellectualdisabilitywithregardstolivingindependently.Thetopic, identified

55

bytheresearchparticipants–whoaremembersofaself-advocacygroup–themselves,comprises

threemainaspects:

• control fromfamilymembers (athemewhichalsocomesout inMamo’s2017dissertation

exploredinthe‘Sport’sub-section);

• inaccessibilityofpublictransport(whichemergesasarecurrentthemethroughoutvarious

dissertationsexploredinthisreview);and

• engaginginromanticrelationships,marriageandparenting(athemeexploredinE.Zammit’s

(2017)dissertationreviewedinthe‘IntimateRelationshipsandSexuality’section).

Solutionstothesebarriers,brainstormedwiththeparticipantsthemselves,include:

• theself-advocacygroupholdingameetingwiththefamilymembers;

• teachingeachotherinapracticalmannerhowtomakeuseofpublictransport;

• communicatingmorewiththeirparentsabouttheirromanticrelationships;and

• makingotherpeoplemoreawareoftheirissuesasdisabledpeople.

Communication is the themecommon toall these solutions.Thedissertationalsoaffirms the fact

that the method used, participatory diagramming, is one favoured by the participants over

interviews (since they can express themselves more freely and collectively), as well as being

accessiblealsotonon-literateparticipants.

PersonswithMentalHealthIssues

Thissectionexploresmentalhealthissuesfromdifferentperspectives.Whiletwodissertationslook

atmentalhealthandhospitalisation;anotherthreelookatvariousmentalhealthaspects:antenatal

depression;mentalhealthdifficultiesexperiencedbycaregiversofthosewithdementia(whichalso

linkstothe‘Families’section);andatmindfulnessskillsforpeoplewithanxiety.

Throughherdissertation, ZammitSaid (2014)explores theexperiencesof six coupleswho

went through antenatal depression. The research participants talk of the perinatal period which

includes:

• feelingsofjoyandsadness;

• differencesbetweentheexperiencesandcopingstrategiesofmenandwomen;

• mothers’feelingsofbeingmisunderstood;

• feelingsofshameandofbeinginadequatemothers;

• inabilitytocope;

• feelingsofbeingjudged;and

• fearthatdepressionmightharmtheunbornchildandothersiblings.

56

The author reports that the couples tend to move toward co-parenting, although the marital

relationshipsveryoftenareputasideand result incouple strain, loneliness,maritaldiscordanda

senseofguiltycomplex.Thesituationtendstochangeafterthebirthofthechild,withthisperiod

oftendescribedby theparticipants as oneof adjustment and stress. Interestingly, the experience

withprofessionals isdescribedassometimesbeing facilitativeandatother timesashindering the

couples. Furthermore, the fathers feel that they are not supported enough during the perinatal

period. Thus, participants express the need for more awareness on the emotional and cognitive

aspects of pregnancy, and the need for consistency in the support offered during the postnatal

period.

Muscat (2015), meanwhile, attempts to discover whether caregivers of people with

dementia living in the community aremoreprone todevelopmental healthproblems. The larger

part of the sixty caregivers participating in this study are female, married and unemployed; and

whilenearlyhalfofthemarethespousesofthepersonswithdementia,a littlemorethan25%of

themarethedaughters.Theauthorreportsthatmorethanhalfofthecaregivershavemoderateto

severe anxiety, while 25% have moderate to severe depression. The findings demonstrate that

caregivers’ depression and anxiety differs among individuals, with the prevailing cause of stress

beingtheongoingburdenthatthecaregiversperceivewhencaringforarelativewithdementia.The

roleofprofessionals (andthe importanceof their listeningtotheserviceusersandtheircarers) is

once againmentionedhere (confirming findings such as Zammit Said’s (2014) describedearlier in

this section, aswell as those in the ‘Residential Settings’ and ‘Community Services’ sections). The

authoremphasisesthatitisessentialforcommunityprofessionalsandcareproviderstobeawareof

theadversitiesexperiencedbyboth thecaregiverand thecare-recipient inorder tosupport them

and facilitate accessibility to services that aid in easing psychological distress. Indeed, Muscat

recommends:

• thatcaregiversshouldbepartnersincareplanning;

• thatcaregiversshouldbeentitledforanassessmentoftheirneeds;

• moreinformationandtrainingtobeavailabletocaregivers;

• moresupportfromemployersofcaregivers

• betterfinancialsupporttocaregivers;

• theavailabilityofcaregiversupportgroups;and

• morerespiteservicesforpeoplewithdementia.

While counselling with people with disability is dealt with in a section of its own, one

dissertation (Zammit Cutajar, 2013) looks specifically at using mindulfness skills in counselling

personswhohaveanxiety.Herstudyisbasedonthelivedexperienceofaforty-yearoldwomanwho

57

hasanxietyandisamotherofayoungadultwithAsperger’sSyndrome.Heranxietyistheresultof

both having a disabled child and various other reasons (including issues from childhood). She

equatesanxietywithafearoverwhichshehasnocontrol.Byincorporatingmindfulnessintoherlife,

the participant was able to take a step back from her internal narrative and her negative

experiences, resulting in thepossibilityof seeinganddoing things inanewway,possiblyawhole

newwayofbeing.Thiscounsellingalsohelpshertofindhervoicewithoutunduefearofdispleasing

orangeringothers(whichhadpreviouslybeensourcesoffearforher).

MentalHealthandHospitalisation

L.Farrugia’s(2016)dissertationoutlinestheevolvingdevelopmentinthepsychiatricfieldduringthe

periodspanning fromthe1920stothe1960s.Whilethegreatestsingle factor that influencedthis

areawastheopeningofMountCarmelHospitalin1861whenpeoplewithmentalhealthproblems

startedbeinghopitalised;duringtheperiodthatFarrugiainvestigates,decentralisationcharacterised

the mental health care in Malta: patients were no longer institutionalised but were treated by

trainedpersonnel inpsychiatry.However,MCHwascriticisedasbeingoutdatedandovercrowded,

and the government tried,without success, to improve andbroaden the services provided at the

General Hospital. Notwithstanding, this hospital underwent constant progress in the services it

provided to persons with mental health problems. Treatments slowly moved away from the

traditionalones,introducingnewpsychiatrictherapiesinallareasincludingdiagnosis,categorisation

and treatment.Asdiagnosisbecamemore specialised, the categorisationofpsychiatric conditions

started to bemore complex and detailed. The treatments were based upon surgical procedures,

physicalmethods,restraints,pharmacologyandpsychology.Often,MCHlackedthenecessarystaff

andequipmenttoofferalltherequiredservices,suchasoccupationtherapyandelectroconvulsive

therapy.After thewar, other services started toevolve suchas theKennedyMemorial Clinic, the

Child Guidance Clinic, the Diagnostic Clinic and the Speech Therapy Clinic. Special schools, day

centresandresidentialhomeswerealsodeveloped.Althoughmanyof theseserviceswereunder-

resourced, theypromotedvariousadvances in the careofpeoplewithmentalhealthproblems in

Malta.Thevoluntarysectoralsohelpedinthisarea,emphasisingtheimportanceofhavingacaring,

albiet segregated, environment for people with mental health problems. It also tried to raise

awarenessontheseissuesandlobbiedthegovernmentformoreresourcesandtheintroductionof

legislationtosafeguardtherightsofthesepatients.Farrugiaconcludesthatoneofthemostevident

results of all these advances in the field of mental health in Malta during this period was the

decreaseof stigmaattached tomental illness.However,Galea (2017) states thatwhile nowadays

people with mental health problems are more accepted in society, their problems are still

58

consideredasatabooandtheyareoftenfacedwithstigma.Stigmaaffectsnegativelythequaltiyof

life of the persons concerned and leads to decreased employment opportunities, diminishes the

qualityofhealthcareandlimitsinteractionbetweenthepersonsandsociety.Theirfamilymembers,

meanwhile, indicatethat, rather thanexperiencingbarriers themselves, theyaremoreaffectedby

how others treat their relative withmental health issues. The author suggests that persons with

mental health problems should be included more in the workforce, an issue which is discussed

furtherinthe‘Employment’section.Additionally,furtheremancipatoryresearchneedstobecarried

out regarding services for the family members. Finally, she explores possibilities of reducing the

stigma attached to mental health problems, an issue which has been discussed by multiple

dissertations throughout this review andwhich affects peoplewith all types of disability. Galea’s

findings show that the transition of services from MCH to Mater Dei Hospital54 might be one

possibility that might decrease the stigmatising manner in which the public views mental health

problems; while the media can also be used to provide awareness and education about mental

healthissues.

54https://deputyprimeminister.gov.mt/en/MDH/Pages/Home.aspx

59

CONCLUSIONWhilethisreviewcomprisesdissertationswhichcoverawiderangeoftopicsrelatedtodisabilityand

disabled people’s lives in Malta, several recurrent themes, as noted in the text, emerge. These

themesarehighlightedhereinordertobringtotheforesomeofthemostpressingissuesaffecting

thelivedexperiencesofpeoplewithdisabilityandtheirfamilies.

Foremost in multiple findings is the fact that the charity-based model is still present in

different aspects of people with disability’s lives in Malta. This is seen through fundraising

campaigns, court decisions and public attitudes. Related to this, is the stigma and discrimination

whichpeoplewithdisability inMalta still face,another recurrent themeemerging throughout the

reviewinvariousaspectsofpeople’slives,includinginemployment,sport,andintimateandsexual

relationships. As expected, inaccessibility comes out as a barrier continuously faced by disabled

peopleintermsofphysicalaccessibility,accesstojustice,accesstoinformation,andbarriersposed

bytheabove-mentionednegativeattitudes.Asmostauthorsthusrecommend,thereisagreatneed

forawarenessraisingaswellastrainingtodifferentsegmentsofsocietyincludingthegeneralpublic,

parents (including in over-protection, especially of their children with intellectual disability),

employers,teachers(especially indealingwithstudentswithdifferenttypesofdifficulties),staff in

residentialsettings,andcounsellors.Withregardstotheeducationsystem,manyauthorsalsopoint

outtherigidityoftheeducationsystemandtheneedforaflexiblecurriculumandlessemphasison

examinations.Meanwhile,withregardstostaffofresidentialsettingsaswellasotherprofessionals

suchasmedicalones, theneedforbettercommunicationbetweenthemanddisabledpeopleand

theirrelativesisstronglyapparent.

Withregardstoservices,thegreatneedforsupport,includingpsychologicalsupporttoboth

individualswithdisabilityandtheirfamilies,isemphasised.Thereisalsoapersistentobservationby

severalauthorsregardingthefragmentationofservicesavailabletopeoplewithdisability,andthus

a call for cooperation between different entities. Authors also note the need for further legal

protection against discrimination, including in Malta’s Constitution and with regards to bringing

national legislation fully in line with the UNCRPD on issues such as supported decision-making.

Relatedly,theneedforinvolvingdisabledpeopleinpolicymakinganddecision-takingisevident.

Ultimately, the issues thatdisabledpeopleencounter in theirdaily livespoint towards the

need forastrongdisabilitymovement ledbydisabledpeople inMalta, thetopicdealtwith in the

beginningofthisreview.Withoutdetractinganyimportancefromtheemphasisontheindividuality

ofexperiencesofpeoplewithdisability–anobservationmadebynumerousauthorsinemphasising

theheterogeneityofthe‘group’ofdisabledpeople–theneedforacollectiveidentityisevidentin

combatingthediscriminationfacedbypeoplewithdisabilityinMalta.

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ListofDissertationsAbela,M.(2012)TheSocialInclusionofStudentswithModeratetoSevereDisabilitiesinaBoys’ComprehensiveSecondarySchool:AQualitativeStudy(M.EdInclusionandIndividualEducationalNeeds)55Attard,A.(2017)PerspectivesontheEmploymentofPersonswithIntellectualDisabilities(M.A.DisabilityStudies)Attard,J.(2017)TheIntroductionoftheEnduringPowerofAttorneyUnderMalteseLaw–ACriticalandComparativeAnalysis(LL.D.)Attard,L.(2017)ExperiencesofwheelchairusersaccessingbuildingsofentertainmentfrequentedbyyoungadultsinMalta(M.A.DisabilityStudies)Axisa,T.(2018)TheEffectivenessofDisabilityQuotaswhenEmployingPersonswithDisabiliites:AnExploratoryStudyamongMalteseEmployers(M.A.YouthandCommunityDevelopmentStudies,DeMontfortUniversity)Azzopardi, A. (2000) Understanding Disability Politics in Malta: New Directions Explored (M.Ed.InclusiveEducation,UniversityofSheffield)Baldacchino, I. (2016) Devising Dance Performance with Adults with Learning Dis/abilities: Anexploraltionofdis/ability,danceandartistry,withspecialreferencetoOpeningDoorsdancegroup(M.A.PerformanceStudies(Dance))Bartoli, S.A. (2017) Living an Inclusive Life: Perceptions of Children with NeurodevelopmentalDisorders(M.A.DisabilityStudies)Bezzina,L.(2005)PersonswithDisabilitiesandEmployment:EqualTreatmentunderCouncilDirective2000/78/EC(M.A.HumanRightsandDemocratization)Bezzina, L. (2013)TakingdowntheWalls:ParticipatoryDiagrammingwithPeoplewith IntellectualDisabilities(M.A.ResearchMethods(HumanGeography),UniversityofDurham)Bezzina,R. (2015) InteragencyCollaboration?ACaseStudyon theNationalPolicyon theRightsofPersonswithDisability(M.A.PublicPolicy)Bonello, A.M. (2015) The Human Rights of Persons with Disability to Non-Discrimination in theMaltese Employment Sector: A Legal Perspective (M.A. Human Rights and Democratization ofGovernance)Borg,D.(2012)TheTransitiontoSecondaryEducationforBoyswithIndividualEducationalNeeds(M.Ed.InclusionandIndividualEducationalNeeds)

Borg,E.(2011)TheProtectionandPromotionoftheRightsofPersonswithDisabilities(LL.D.)

55WheretheUniversityisnotspecified,thismeansthatthedissertationwassubmittedtotheUniversityofMalta.

61

Borg,M.(2009)HowdoMainstreamPrimarySchoolChildrenwithoutDisabilitiesperceivetheInclusionofPeerswithDisabilities?(M.EdInclusionandIndividualEducationalNeeds)Briffa, A. (2015) Investigating Literacy Skills in Students with Dyslexia in Malta: Models ofIntervention,ImplicationsforTeachingandInclusion(M.A.DisabilityStudies)Brincat,M. (2014)AStudyof theGuardianship Legislationwith Emphasis on IntellectualDisability(LL.D.)Bugeja,R.M.(2014)Autism:DisorderorDifference?AlocalstudyontheperceptionsofprofessionalsworkingintheAutismField(M.A.TransculturalCounselling)Busuttil, B.A. (2017) Combatting Discrimination Based on Disability from a Substantive andInstitutionalPointofView(LL.D.)Cachia,D.(2017)DisabilityandSport:TheExperiencesofAthletesandtheirCoaches(M.A.DisabilityStudies)Camenzuli,J.(2012)Inquiry-BasedLearninginMathematics:TheCaseofStudentswithSEBD(M.EdinSocial,Emotional,BehaviouralDifficulties)Camilleri,C.(2010)ACriticalAnalysisofthevariousgroundofdiscrimination,theregulationthereofandECJJudgements(MagisterJuris(EuropeanandComparativeLaw))Camilleri, C. (2012) An Analysis of the United Nations Convention on the Rights of Persons withDisabilities and its influence on the European Union and Malta (M.A. Human Rights andDemocratization)Camilleri,M. (2015)Must I SitDown?AStudyof theExperiencesof SecondarySchoolMaleADHDStudents with regards to their Inclusion within the Inclusive Education System in Malta (M.A.DisabilityStudies)Camilleri,R.(2012)BridgingtheGap:SkillstoEnhancePositiveRelationshipsbetweenTeachersandStudentswithChallengingBehaviour(MastersinCounselling)Camilleri,R.(2017)RedefiningInsanity:BringingtheInsanityPleaintothe21stCentury(LL.D.)Camilleri Zahra, A.J. (2014) Enabling Counsellors: An Exploration of the Social Construction ofDisabilityamongMalteseCounsellors(M.A.DisabilityStudies,UniversityofLeeds)Cardona,G.C.(2007)JustlikeAnybodyElse?:Aninvestigationintotheoutlookofyoungempowereddisabledpeople living inMaltaonhow they view themselves, society andhow theymay interpretdisability(M.A.DisabilityStudies,UniversityofLeeds)Caruana, D. (2017) Does therapeutic human germline editing discriminate against persons withdisability?(LL.D.)Cassar,N.(2014)MalteseMothers’ConstructionoftheirSons’AutismSpectrumCondition(M.Psy.)Cefai,B.(2009)FactorsLeadingtoSocio-EmotionalandBehaviouralProblemswithintheFirstYearinthePrimaryClassroom(M.EdinSocial,Emotional,BehaviouralDifficulties)

62

Cini, M. (2017) Play and leisure environments as seen through the eyes of a child with sensoryprocessingdifficultiesandofsignificantothers:Reflectionsonneedsandproposalsforchange(M.A.DisabilityStudies)Cortis,A.(2017)TheLivedExperienceofAdultSiblingsofPersonswithComplexDependencyNeeds(M.A.DisabilityStudies)Cortis,L.(2014)WalkingtheTalkorActingasGatekeepers?ClassroomTeachers’PerceptionsoftheRoleofPsychologistsinSupportingPrimarySchoolChildrenwithADHD(M.Psy)CremonaCaruana,K.(2016)Disability:AnAgendaforBioethics(M.A.Bioethics)Cutajar,K.(2006)AnAnalysisoftheDisabilityConceptasTakenfromtheLegalPerspective(LL.D.)Cutajar, T. (2009) Breaking the Link Between a Poor Start in Life and a Dismal Future - HelpingChildren with SEBD in Malta through Nurture Groups: An Action Research Study (M.Ed in Social,Emotional,BehaviouralDifficulties)D’Amato,A.(2009)TheInterrelationBetweenLegalandClinicalInsanityinCriminalLaw(LL.D.)Dalli,M.G. (2017)The ImpactofAdmissionofaSpousewithDementia inaCareHomeonSpousalRelationships(M.A.GerontologyandGeriatrics)Darmanin, E. (2014) The Narratives ofMen andWomen Labelledwith Intellectual Disability, whoHave to Live in Residential Settings in Malta: A Thematic Analysis (M.Sc. Applied Psychology ofIntellectualDisabilities,UniversityofPortsmouth)DarmaninCarbonaro(2015)PeoplewithDisabilitiesandCatechesis:TheWayForward!(M.A.YouthMinistry)DeMartino,S.(2017)LivingAutism–AnImmersiveLearningExperience(M.F.A.inDigitalArts)Debattista, M. (2015) Persons with Disability and Intimate Relationships: Realities in theMalteseContext(M.A.DisabilityStudies)deBono,M.C.(2015)TheLivedExperienceofAcquiredPhyscialImpairmentinYouth(M.A.DisabilityStudies)Debono,S.M.(2006)ICTandDisability:BridgingtheDigitalDivide(M.B.A.(E-Business))Depasquale,E.(2005)AgeandDeafMutismasGroundsforExemptionandMitigationofPunishmentundertheMalteseCriminalCode:ATimeforSeriousReform?(LL.D.)Diacono, V. (2015) Internet Access for the Visually Impaired (M.A. Technical Communication,SheffieldHallamUniversity)Dimech, J. (2007)Non-disabledStudents’Perceptions,AttitudesandBehaviour towardsPeerswithDisability(M.Ed.InclusionandSpecialNeedsEducation)

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Dimech, K. (2014) The Incoming of the Other: A Comparative Study of Published Narratives ofMothersofChildrenwithDisability(M.A.ComparativeEuro-MediterraneanEducationStudies)Ellul, S. (2015) From Exclusion to Inclusion: TheWay Forward under the NewMental Health Act(LL.D.)Falzon,C.(2014)WrongfulBirthandWrongfulLife:LegalandMoralIssues(M.A.Bioethics)Farrugia, C. (2016) The Impact of Lower Limb Amputation on Self-Identity: Implications for theCounsellingProfession(MastersinCounselling)Farrugia,L.(2016)MentalillnessandhospitalisationinMalta:1920s–1960s(M.A.History)Farrugia, M. (2015) Equal Recognition Before the Law and Access to Justice for Persons withIntellectual, Sensory and Psychosocial Disabilities: An analysis of the situation inMalta in light ofrecentDevelopments(LL.D.)Fenech, L. (2012) Nurture Groups for Pupils with SEBD: Inclusion or Exclusion? (M.Ed in Social,Emotional,BehaviouralDifficulties)Galea,F.(2015)GettingusReady:Thetransitionfromschooltocompetitiveemploymentforpersonswith learningdisabilities:parents’,students’andeducators’perspectives (M.Sc.AppliedPsychologyofIntellectualDisabilities,UniversityofPortsmouth)Galea,R. (2017)The livedexperiencesofpeoplewithmentalhealth illnessandthe impactontheirfamily(M.A.DisabilityStudies)Garland,R. (2015)The Impactof theFamily,ChurchandStateon theAspirationsofYoungPeoplewithDisabilityinMalta:ACulturalPerspective(M.A.DisabilityStudies)Gatt, M. (2007) Communication through Technology: Enabling Participation for Maltese ChildrenwithLearningDisabilities(M.Sc.,UniversityofManchester)Gatt,S.(2016)TheProhibitionofInhumanandDegradingTreatmentofPrisonerswithMentalHealthProblemsundertheECHR(LL.D.)Gauci, S. (2017) An Exploration of the Lived Experiences of Parents with Multiple Sclerosis (M.A.DisabilityStudies)Ghirxi, J. (2012) The Educational and Social Experiences of Students with High Ability: Emergingperceptionswithinsecondaryschoolsettings(M.Ed.InclusionandIndividualEducationalNeeds)Grech, A. (2012)Carrying out Circle of Friends – A Personal Reflection (M.Ed in Social, Emotional,BehaviouralDifficulties)Grech,J.(2017)HowwilltheConventionontheRightsofPersonswithDisabilities(anditsOptionalProtocol)affecttheRightsofPeoplewithDisabilities?(LL.D.)Laferla,M.(2009)SpecialNeedsTrust(LL.D.)

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Maidani,T.(2013)LivingwithDisability:ASociologicalInquiryoftheLivedExperiencesofAdultsWhoGrewupinExceptionalFamilies(M.A.(Prep.Course)inSociology)Mamo, D. (2017) Let me Win: Narrative of an Intellectually Disabled Person Participating inCompetitiveSport(M.A.DisabilityStudies)Mifsud,S.(2017)BeyondDiagnosisofHearingImpairment:ParentSupportandInformationinMalta(M.A.DisabilityStudies)MulaFalzon,C. (2012)Developing IndividualTransitionPlans–ATrainee INCO’sExperience (M.EdInclusionandIndividualEducationalNeeds)Muscat,M.(2015)Depression,AnxietyandQualityofLifeofCaregiversofIndividualswithDementiaLivingintheCommunityinMalta(M.A.GerontologyandGeriatrics)Pace,M.(2017)TheAdministrationofPropertyofOthersUnderMalteseLaw:Whatistheextentofprotectionaffordedtovulnerablepersons?Astudywithspecialemphasisontheelderlyandpersonswithdisabilities(LL.D.)PereraVega,L.(2014)SeeinganInvisbleChild:UsingDifferentTherapeuticModalitiesinCounsellingChildrenwithAutism(MastersinCounselling)Piscopo, A. (2014)Women and Prenatal Testing: New Medical Frontiers, New Legal Challenges(LL.D.)Pleven,L.(2015)TheOutcomesofMainstreamPost-SecondaryforPeoplewithIntellectualDisability(M.A.DisabilityStudies)Portelli, R. (2016)Beyond theB’s andD’s:ARetrospectiveNarrative on Secondary Schooling fromAdultswithDyslexiaandCounsellors(MastersinCounselling)Portelli,R. (2017)ListeningtoSilentStories:MalteseDeafPeople’sParticipation inCommunityLife(M.A.DisabilityStudies)Psaila,E.(2015)WelcometomyLife:AJourneythroughtheLifeofaChildwithaPhysicalDisability(M.A.DisabilityStudies)Pulis,L.A.(2001)DiscriminationandtheDisabledunderAct12000relativetoEqualOpportunities:AnAppraisal(LL.D.)SchembriLia,E.(2012)NotBrokenbutStrenghtened:StoriesofResiliencebyPersonswithAcquiredPhysicalDisabilityandtheirFamilies(M.Psy.(Clinical))SchembriLia,E. (2016)TheCoupleRelationshipwhentheFemalePartnerhasanAcquiredPhysicalDisability(MastersinFamilyTherapyandSystemicPractice)Spiteri,E.(2015)StudentswithaDisabilityattheUniversityofMalta:OpportunitiesandChallenges(M.A.AdultEducation)Spiteri, M. (2012) Improving Behaviour through Physical Activity (M.Ed in Social, Emotional,BehaviouralDifficulties)

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TantiRigos,C.(2012)“EverythingisDangerous”:AFoucaultianReadingoftheRoleoftheInclusionCoordinator(M.Ed.)Vella, C. (2017) An Evaluation of Community Services being offered to Persons with Disability inMalta(M.A.DisabilityStudies)VellaGera,J.(2017)TheExperiencesofSiblingsofDisabledChildren(M.A.DisabilityStudies)Xerri, F. (2017)How a Family with Two Disabled Children Experiences Societal Perceptions (M.A.DisabilityStudies)ZahraLehtonen,K.(2012)BacktoMainstream:ReintegratingstudentsfromLearningSupportZonesintothemainstreamsystem(M.Ed.)Zammit, A. (2010) The transposed employment directive, the forthcoming anti-discriminationdirectiveanddisabledpersons:Bringinglegislationfrompapertolife(M.A.EuropeanStudies)Zammit,C.(2001)Insanity:ACaseofPunishingtheMentallyIll?(LL.D.)Zammit,E. (2017)Whatare theagents thatcontribute to themissingaspectof sexuality inyoungpeoplewithmildtomoderateintellectualdisabilityinMalta?(M.A.FamilyStudies)Zammit, I.M. (2017) Experiencing the job interview process: Different perceptions by personswithphysicaldisabilityandHRmanagers(M.A.DisabilityStudies)Zammit Cutajar, F. (2013) Exploring the Magic Quarter Second: Using Mindfulness Skills incounsellingPersonsManagingAnxiety(M.A.TransculturalCounselling)ZammitSaid,A. (2014)AntenatalDepressionasExperiencedbytheCouple–ARetrospectiveStudy(M.Psy.(Clinical))