Fellowship

Albinism Life Issue 11 – Autumn 2006

Also in this issue:

� Summer Barbecue Bonanza

� NOAH’s conference report

� Do you want to be a trustee?

� Exam Considerations

See fundraising page 6

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Editorial

Many of you have been busyfundraising. Thank you to manypeople who have picked up thegauntlet and done their bit to pitch in.Whether it is a big or small amount itall adds up to make a difference andmaking a difference is what we are allabout. (cheesy comment, I know, butit works on one level). We have reportsof the three BBQs this summer,including a splendid and successfulfirst effort by Gemma in Glasgow. Thefirst event is always the most difficultand we hope it is the first of many,congratulations go in that direction!We also have pictures and news ofevents in Ireland which continues tobe very active. So thank youeverybody, and if you think you maybe able to do even more, please thinkabout becoming a trustee as we areshort of people for these roles.

This summer saw the Da Vinci Codecome and go and we are alwaysinterested to hear your views andreactions. I went to see the film with afriend and my son, who likes to sitapart from me in the cinema, satthree rows behind. During the trailers,an albinism hat landed in my lap,thrown by Hilary, who had just satnext to my son. She was equally eagerto view the performance at the firstopportunity and by chance hadchosen the same performance in thesame cinema! We swappedimpressions immediately afterwards.It could have been a lot worse, weagreed. Silas, the character withalbinism, was an accurate portrayalwith respect to his appearance, but

not his actions; driving at high speedin the dark to a place in the countryand creeping up behind people!Whilst on holiday in Cornwall thissummer I visited the museum atJamaica Inn which tells the story ofDaphne Du Maurier’s famous novel. I was surprised to learn that FrancisDavey, the vicar of Alternun, and chiefbaddie in this novel is a character withalbinism. Another to add to the list!Harper Lee’s Boo Radley in To Kill AMocking Bird is still the best depictionof a character with albinism in anybook that I have read. A negativeportrayal of albinism in appearance oractions it seems will always be withour community. It is important thatwe challenge and correct the negativestereotypes, not only for ourmember’s self-esteem, but to educatethe wider audience who will listen. We do what we can.

Robin, our resident globetrotterattended our sister organisation’sconference, to publicise our book andliaise with our American cousins.Judging by the photograph, it lookslike he did a lot of liaising, (what ababe magnet!). As always we areinterested inyour views andphotographs.We love yourphotos so sendthem to us, Paleand Proud, welike it!

An assassin fromthe conference!?

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AF 75 England 0

Dedication was needed to attend theLondon BBQ as this was a day thatEngland were playing in the WorldCup. A large screen was set up in aclassroom for those who don’t knowbetter than to support England.(I write as an Englishman who hasbeen disappointed on too manyoccasions – but I couldn’t helpsneaking a look). The sun shonerather too strongly for most of us andour crowd dispersed rapidly to shadyareas around the playground. Onceagain we are indebted to the Orrosfamily for arranging the venue andmuch more. Seventy five peopleturned up. We had an informalmeeting led by Mark Sanderson andRobin Spinks spoke of the latest DaVinci Developments, including how hemanaged to get a seat in the film’spremiere in London. He gets around!– Eds

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Big congratulations are in order forGemma Sherry who organised herfirst Glasgow Barbecue. About 55people got together in MugdockCountry Park on a fair-weather day in

August. We have reports that it was ahugely successful event where peoplewere able to share experiences,especially the children. They look likethey had a great time.

Party in the Park

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The Dublin BBQ’s continue to go from strength to strength under Treasa’senthusiastic stewardship. The parachute went down (and up!) a treat as did theimpromptu singing and dancing – evidenced in the photos.

Any opportunity for a knees–up!

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You will notice that some of ourfundraisers are on the front page.These four photos clockwise are…

The Dublin Mini-marathon gangconsisting of: Edel Kealy, SuzanneKelly, Georgina Brennan, SuzanneKeogh & friends, Mary McNamara,

P Gallagher, Paul & Mary Meehan,Maura O’Kelly & Michael Hennessy

This event took place on the 5th ofJune and raised a massive minimum of€2037. Well done to you all!

The O'Kane family are pictured withRosie and Treasa our Ireland contact

Fundraisers respond to the challenge!

people. A big thank you goes to theO'Kane family and Miss F Quinn whoraised a staggering £2100 in a charityfund-raising evening.

Pictured with Drummond Cameron,our support person in Glasgow andSW Scotland, is Lucie Donaldsonaccepting a cheque from CarolineDonaldson and Hilda Stewart. £1300was raised from an exhibition ofHilda’s sewing class and £150 wasraised by the Donaldsons doing asponsored rowing race at Loch Earn inApril, 7 miles in an old fishing boat.

And the Grandparents Donaldsonraised £130 with the help of the localsports club.

What a busy active clan! Thank you all!

Brigitte Kemish (pictured on the coverwith customers and opposite withdaughter Katy) and her family held aBric a Brac stall back in May wherethey raised £186.00 for the AlbinismFellowship. What a fun idea! Manythanks to all the family.

We haven’t got any photos (maybejust as well) from the Hapton Ladiesslimming club who raised £50 byNOT losing any weight! Interestingconcept! Thanks ladies!

Julia Lowe held a make-up party andraised £147 – prettily done Julia!

And there are many other generousdonors out there who have sent invarious amounts, every bit of whichwe are really grateful for and willenable the Albinism Fellowship tocontinue to fulfil its mission.

Scotland Pub Quiz 18thOctober

If you are around Dundee on thisevening do join in the Pub Quiz atFort Bar, Broughty Ferry at 8.00pm.The Beaton family hope to raise somemoney for the fellowship so all brainsneeded. Sounds like fun!

Bridgette Kemish also emailed us this...

“This year I applied to the FamilyFund. Some of you may have heard ofit and had help from them. It is acharity aimed at helping families on alow income (below £23,000).

After applying I was visited by a ladywho took down details of mychildren’s disabilities and askedquestions about our income andbenefits we were receiving. We wereasked if we needed a holiday and wasour washing machine workingproperly etc.

A few weeks later I received a chequefor £650.00. This was for protectiveclothing (£200.00) and a holiday(£450.00). We were also given£400.00 credit to use in Comet for anew washing machine. You arerequired to keep the receipts for ayear. You can apply online to theFamily Fund.

Hope this is helpful”

Brigitte is mum of Katy 9 years andHarry 4 years both have OCA2.

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Consider this... GivingSomething Back

As you may know we are short ofsome trustees for the fellowship. Weare actively seeking people to betrustees – could you be one of them?

Enjoyable, sociable andfulfilling

It is an enjoyable, sociable andfulfilling experience with opportunityto develop new friends. You may alsofind it a useful developmentopportunity, as it may give you thechance to acquire new skills andexperiences.

Who can be a trustee?

Anyone with an appropriate personalor professional interest in albinism iswelcome to apply. Our current boardof trustees includes people withalbinism and parents of children withthe condition. The team includespeople who are, for example,teachers, nursery nurses, accountants,careers officers and voluntary sectormanagers.

All applications are welcomed, but wewould especially like to hear frompeople who can help us withfundraising, conference management,and providing print & web basedinformation. We would also welcomepeople with experience of ocularalbinism and people from minorityethnic groups.

What is expected of a trustee?

Trustees are legally responsibletogether for the overall managementand direction of the charity, throughthe President, and for making sure it isrun and its finances are managedproperly.

Until and if we are able to employpaid staff or work with volunteers ona more formal basis our trustees areactively involved in delivering theservices that the Fellowship provides.Each person takes lead on arranging aparticular aspect of our work, such asthe magazine Albinism Life, ourHelpline or the biannual conference.We are developing a network of LocalContact Persons to help us in ourwork and would like to attract otherregular volunteers.

We would ask you to be activelyinvolved in an aspect or aspects of ourwork appropriate to your experience,skills and interests and we wouldagree with you the action points youfelt you could take on, on a regularbasis. These are voluntary roles andtherefore our expectations arereasonable. However, we do needpeople who can work in a team andare willing to proactively help us indoing things and moving theorganisation forward, and in rollingup their sleeves at events such as ourconference to get all the jobs done.

Being a trustee is a purely voluntaryrole, so there is no pay. However, weare usually able to reimburse your outof pocket expenses, such as the costs

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Trustees Required!

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of travelling to a meeting and stayingovernight. As much as we can we tryto keep these costs low bymeeting/staying at someone’s houseand having a take-away meal or usinga free meeting room.

Although there is a formal processobserved in meetings we feel that weare a friendly, sociable, supportive andinformal team who generally discussand develop ideas and move themforward by consensus.

We have 3-4 Trustee meetings per yearand we get involved with our AGM,biannual conference and wherepossible regional events. We needpeople who are in a position to attendand support some of these activities.In between these times the main formof communication is via emails andoccasional phone calls.

Interested?

To find out more without obligationsee the website ‘Vacancies’ or emailinfo@albinism.org.uk

If you have any specific questionsabout becoming a trustee or if you justwish to talk over the idea pleasecontact: Mark Sanderson on07810 548 798

It is a rewarding role. We all have beenin the position of needing support atsome time and we have benefited frombeing members of the fellowship. As newchallenges arise it is good to be able to

talk to someone who may have alreadytackled a particular issue. We all learnfrom each other and for us on apersonal level we wish to facilitate thatcascade of skills and knowledge betweenmembers. That is why we are stilltrustees although our children may nolonger obviously need the support.However, we would mention that ourgrown children do really appreciate thereal sense of ‘belonging’ that thefellowship fosters and want to continueto be members and involved. (Eds)

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The Trustees of 2005

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Now is the timeWe know that the exam season is overnow, congratulations orcommiserations (hopefully not toomany) to all who have just receivedtheir results.

Now, however is the time to planahead for all Visually Impaired (VI)pupils, with regard to their next set ofexaminations. You may be aware thatVI candidates have special provisionssuch as double time, often a privateroom with one-to-one supervisionwith breaks and special papers.

There are Large Print and then thereare Modified Large Print papers. Thefirst is self-explanatory, but the latterhas large print and modificationsmade to elements such as diagramsetc. to make them accessible. It isimportant that you clarify which ofthese is required. Teachers are allowedto open these early to see whetherany extra arrangements, such asordering extra equipment, needs tobe made. It is important thatexamination boards and schools aremade aware of the candidate’srequirements at the start of the courseand that these papers are ordered wellin advance.

For Key Stage 2 and 3, papers areusually ordered by the end of theAutumn Term. Schools need advancenotification if they are to apply forthese special papers and examarrangements. Secondary schools and6th Form Colleges will have an

Examinations Officer, but it willprobably only be necessary to discussthe needs of the pupil with theSENCO (Special Educational NeedsCOrdinator). Bear in mind that GCSEBoards vary in their arrangements andthe provisions are not uniform.

If you are starting at University youmay need a letter from your medicalspecialist stating your condition andvisual impairment to be given to theExamination Officer (or Proctor) so it’sworth getting this sorted before youstart at Uni.

You can obtain more informationfrom www.qca.org.uk orwww.dfes.gov.uk

There are two issues to consider withalbinism – not just the ability to readsmall print, but also the effect of stresson Nystagmus which makes anyreading more tiring and difficult forthe candidates, above and beyond thenormal visual impairment.

A week of exams can be exhaustingfor anyone with nystagmus and if ourchildren are to have a level playingfield these provisions are essential.

If you are experiencing any difficultieswith schooling and education we arehappy to offer any advice that we have.We may not know all the answers butour children have now gone through allthe levels of education. (Eds)

Exams Provisions in the UKx

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Exams in Ireland

Treasa O Callaghan, our Irish ContactPerson and herself a Learning SupportTeacher, went with Emilie Conwayand Paul O Donovan to a meetingwith two officials from theDepartment of Education in Ireland.These are Sinéad KeenaghanExecutive Officer, Special Needs andMichael Kiely Higher Executive Officer,Special Needs. They spent two hourslistening to each other and discussingthe working title: Proposals to BetterMeet the Needs of the VisuallyImpaired students in Junior andLeaving Cert. Exams. We are verygrateful to Sinéad Keenaghan andMichael Kiely for giving their time forthis discussion and travelling fromAthlone to Dublin as it proves theirenthusiasm to solve the issues andcome up with solutions.

Unfortunately we don’t have space tofit all that was discussed into thenewsletter, but here is a summary ofthe main points…

(*Hereafter VI is an acronym forvisually impaired)

Issues and proposals discussed were asfollows:

1. The need for modified exam papersfor students with visual impairment.

2. Modified exam papers are papers inwhich the print is enlarged to 18 or20 point on standard A4 paper.Layout is absolutely clear, wellspaced, and accompanied by well- positioned and clear images,markings and colour. (The currentsolution of blowing the papers up

to A3 and removing images hasmany faults. This huge paper isvery awkward on the desk, the seaof large print and huge gapsbetween questions, without colouror images is very disorientating. Asa result students lose their place onthe exam paper or leave outquestions.)

3. With respect to images, markingsand colour as they appear onstandard exam papers – so long asthey are absolutely clear; theirenlarged version can be used onmodified papers. However, wherethere is any doubt about clarity,there is need for a modified image.

4. Modified image is one in whichambiguity about colour, line,shading, quality of print, size ofimage has been altered, tidied up,focused so as to be absolutely andvery visibly clear. (The presentModified papers are the textversion of the braille. Howeveralthough v.i pupils have beinginstructed to answer questions withvisuals they are expected to answerquestions with no visual clues. Theactual questions are altered attimes.)

5. Deficiencies in present allotment ofextra time

(Students with VI need more that thepresent allotment of 10 mins extratime per hour. The Irish system wascompared to that of the UK where VIpupils are entitled to up 100% extratime.)

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6. The need for person with visualimpairment who has been throughthe Irish education system, andpreferably, on through third leveleducation, to be part of exampaper review panel. Having exampapers for blind and VI studentsreviewed by “braillers” only, cannotattempt to address the needs ofstudents with VI who do not readbraille.

7. Direct concern over currentsituation and prevailing attitude toVI students’ entitlement to extratime in English and maths:standard duration of these examshas been extended for all studentswhile extra time for VI students wasreduced (as it was considered partof this extra time).

8. Accessibility: the importance ofvisiting teacher, to liaise from dayone, between school and parents,trying out a variety of options andaccommodations in order to bestdetermine, well in advance of exams,how best to meet students’ needs.

Closing Remarks:We have moved on somewhat overthe years e.g. pupils having their ownroom to sit exams, being allowed arest break, enlarged papers…. We aregoing in the right direction. It is also agood step forward that we wereinvited to meet with the exam boardto give our proposals. Let us hope wekeep evaluating our current system asthere is still scope for improvements.

We must cater for all children’s needs.We are not requesting the exam

board to customize as there are agood number of other pupils thatcould benefit from our proposals. Weare attempting to represent their caseand bring it to the attention of theExam board. Treasa O Callaghan

Correction!!I was just reading the Albinism FAQ(on the website), and I noticed that inthe “Are there any things that shecannot do?” the author (that would beme – Ed Martin!) mentioned not beingable to play cello because the musicwould be too far away.

I just thought I’d let you know thatI’m a 25 yr old with albinism and6/60 vision, and I play the violin andbass clarinet. My brother with similarvision plays clarinet (and teaches it).We both use a monocular mountedon a pair of glasses (a bit like whatsome surgeons use) to read the music.We use one eye to read the musicthrough the monocular and the otherto watch the conductor – you getquite good at looking in two places atonce! I used to get tired eyes afterabout an hour, but practice makesperfect, and I can play for severalhours at a time. It’s also helped me tocontrol my nystagmus too – my eyesmove but I don’t notice any changeto what I see (except when tired).

Anyway, just thought this might be ofsome use to someone. Feel free to getback to me if anyone is interested. Margaret Peacephysmargaret@yahoo.co.nz

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Fellowship – training by prior arrangement

Learning and livingwith Albinism: focuson children and youngpeopleAlbinism is one of the most prevalentforms of visual impairment in children.This training provides valuableinformation and insight into themedical, educational and socialimplications of the condition. It willenable professionals andparents/carers to effectively identifymore clearly the needs of children andyoung people with albinism and toimprove the quality of interventionand support they offer.

Aims

Attending this event will enabledelegates to:

1. widen their knowledge of albinism

2. understand the difficulties typically experienced by children and youngpeople with albinism, especially in compulsory education

3. learn about ways to assist children and young people with albinism to overcome any difficulties they may experience because of the condition

Presenters:

• Mark Sanderson, President of Albinism Fellowship & Chair of Albinism World Alliance

• Robin Spinks, Global Disability & Assistive Technology Advisor for Sightsavers International &

PR/Media Co-ordinator for Albinism Fellowship

Who should attend?

Teachers of VI, teaching assistants,SENCOs, Connexions staff, studentdisability advisors, parents/carers,social workers, health professionals,rehabilitation specialists, local societystaff

Cost: A charge is made for thisservice. Details available on enquiry.

Delivered successfully through thenetwork of RNIB education &employment centres in 2005 thiscourse is now being made availableby the fellowship directly to groups ofprofessionals and parents/carersworking with people affected byalbinism.

Although the above example of thetraining is primarily focussed onchildren, young people andschool/college issues, the trainingprogramme is very adaptable andother modules can be included ineither a day or half day programme,covering the core aspects of albinismbut with a greater emphasis either onadults, employment, sun protection orsocial issues for example. We cantailor our training to suit your needs.

Are you interested and in contact withan organisation, group of professionals,or parents/carers who would like tobenefit from this training? If so, whynot find out more. For information onthe training, please contact Mark atmark.sanderson@mencap.org.uk or callhim on 07810 548 798 anytime.

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NOAH 2006 Conference

Standing on theShoulders ofGiantsWednesday 17th July came round veryquickly this year for me. After a weeklong workshop in Austria with mywork, I returned to the UK for a quickmeeting in Birmingham, a night inLondon and then a five am taxi toHeathrow airport. My departure forMinneapolis and the 2006 NOAHconference was upon me in no timeat all.

On arrival at Minneapolis I veryquickly began to spot my fellowconference participants. There’ssomething almost magical aboutmeeting people with albinism all overthe place, in the shuttle bus, in thehotel lobby and in the elevator.Everyone was so friendly andwelcoming. My first day was spentrelaxing and catching up witheveryone and meeting new people.

After a fascinating old fashionedtrolley bus tour of the wonderful twincities of Minneapolis and St Paul, Ihad the chance to meet lots of newpeople over lunch in a lovely Irishpub. The first time I’ve ever been in apub with a kissing room. Yes I’m notkidding and here’s the picture toprove it!

The conference programme kicked offon the Thursday evening with awelcome reception and a veryentertaining and informative chatshow style session hosted by NOAHmember Dennis Hurley. Dennis did afantastic job interviewing variousNOAH members about their lives andcurrent projects, all done in aLetterman style show with somethingto interest everyone. Singersongwriter and NOAH memberBrooke Fox was among the guestsand afterwards she gave a fantasticperformance of two tracks taken fromher wonderful new album “Breathethe Same Air”. You can check outBrooke’s website and listen to hermusic at www.brookefox.com

Albinism Fellowship got a chance topromote Real Lives when I appearedas a guest on the chat show topromote the book and talk about themotivation behind Real Lives and thethree perspectives from which it grew:the perspective of the person withalbinism, the parental perspective andthe need for advocacy.

I attended a number of sessions anddiscussion groups over the weekendconference including employment,The Kissing Room

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coping without driving and adultissues. Brian Evans also provideddelegates with an interestingperspective on how people withalbinism see, something which he iswell known for being able to do. Hisuse of a digital camera analogy is aclever one and he is able to de-jargonise albinism in a meaningfuland helpful style.

Delegates at the NOAH conferencewere mostly from the US but alsoincluded representatives from manyother countries around the worldincluding the UK, Austria, Turkey andCanada to name but a few. I met JakeEpelle, the President of the AlbinoFoundation in Nigeria. Jake took partin a BBC World Service documentarywe supported back in May and so itwas good to meet up and have achance to network. Jake is very keento work with Albinism Fellowship andhas invited us to speak at aconference in Nigeria in February2007.

The exhibition at NOAH featured awide range of sun protective clothing,low vision devices and also someresearch stalls including one being runby the University of Minnesotalooking at how people with albinismread. Many members stopped by toparticipate in the research project.There was much similarity with thekind of exhibition we’re familiar withat our AF conferences.

The conference closed over breakfaston the Sunday morning and includeda session where prominent NOAH

members were recognised for theircontributions to the albinismcommunity. All in all the conferencewas a great event and a fantasticnetworking opportunity. Over dinnerwith a number of NOAH memberssomeone said “you know there’ssomething really special about beingwith so many people with albinismand I don’t know what it is”. I reckonit’s about fellowship and the sharingof experiences. Many people also saidthat they’d heard how good ourconferences in the UK have been andthat they plan to come to our nextone. Everyone is looking forward toNOAH Conference 2008 which will beheld in Las Vegas.

Robin with friends from AF andNOAH (at some point on theSaturday evening!)

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And did we mention our book?Just in case you have been ona different planet and have notnoticed or got your copy yet,here is another chance.

Please send me __________ copies of REAL LIVES: Personal & Photographic

Perspectives on Albinism @ £20.00 per copy (inc. post & packing).

Mr/Mrs/Miss/Ms/Dr Etc.: Surname/Last Name:

House/Flat No./Name:

Street/Road:

District/Area:

Town/City: County/State:

Postcode/ZIP code: Country:

I enclose a cheque / postal order (delete as appropriate) made payable to

Albinism Fellowship for £ _____:___.

Send your order form and payment to: REAL LIVES, Albinism Fellowship,

C/O Warner Street Clinic, 27 Warner Street, Accrington, Lancs., BB5 1HN, England.

Pale and Proud and in the book!

Order your copies with this form