Disability now. June 1991.

28 Pages·1991·14.4 MB·English

by  The Spastics Society

JUNE 1991
C—O
National protest
This month
ACCESS
over loss of
Action at St Paul's
8
MOTORING
Gti look-a-like
9 a(vocacy rights
SPORT
Tennis and marathon
10
LIVING
Relationships (5) Angry disability groups have launched a national cam-
Making the break
paign to protest against the Government’s decision to
11 scrap vital sections of the 1986 Disabled Persons’ Act.
BENEFITS
ACT NOW, a consortium of thrown in the bin. We are urg-
Therapeutic earnings:
more than 40 disability groups, ing everyone to write letters of
who's eligible?
including MENCAP, RADAR, protest to their MP.”
16 the RNIB, the British Council BCODP director Richard
ARTS of Organisations of Disabled Wood commented: “The Goy-
Art, video, tv and music People (BCODP) and The ernment's decision is a big dis-
Spastics Society will lobby Par- appointment but not surprising
17
PROFILE liament on 8 July to mark the considering their record on dis-
Louise Mortimer fifth anniversary of the Act ability issues. It is important
receiving Royal Assent. People the Act is passed because dis-
18 with disabilities, their advocates abled people's lives would be
OUT AND ABOUT
and carers will join the demon- improved dramatically.”
Riding makes new friends
stration. Sally Carr, co-ordinator of
20 The campaigners will also The National Advocacy Ser-
In the swim: MP David Blunkett and sons in Sheffield's new
PERSON TO PERSON send a delegation to the Prime vice, said: “We are supporting
£52 million Ponds Forge International Sports Centre, built
’62 clubs for the ’90s Minister and hand him a letter the campaign because it is
for the World Student Games in July. On 14-15 June Ponds
23-27 Forge hosts a Festival of Sport for severely disabled people of protest. vitally important that autho-
CLASSIFIEDS organised by CP Sport, the sporting arm of The Spastics Mary Holland, assistant rised representation is recog-
Society. Tel: Cathy Lowe [phone]. SYNDICATION INTERNATIONAL director of RADAR and co- nised in law as it is in other
ordinator of ACT NOW, said: countries.”
“It is a travesty that an Act Sally Greengross, director of
RADAR and
which has been given Royal Age Concern said:“It is terrible
Every Original is Assent and gone into the that the Government has put
statute book should have many financial constraints before the
DLF set
of its most important sections
signed. Continued on page 3
to merge Barnhill opt out?
Two of the most important
charities in the disability Parents of pupils at a show- A ballot of all parents will
field have decided in prin- piece integrated school are now take place this month.
ciple to merge, possibly by applying to opt out of coun- Over 50 per cent must vote,
April 1992. cil control in a last ditch and there must be a clear
The trustees of the Disabled attempt to avoid closure. majority of over 50 per cent in
Living Foundation and _ the Barnhill School in Hilling- favour.
There is only one executive committee of the don, which has had £500,000 If the “opt out” lobby wins,
soins = company who have Royal Association for Disability spent on making it accessible, is the school governors have six
and Rehabiliation (RADAR) to close in 1993. months to publish proposals
been building
are expected to make their Councillors decided to close about how the school will oper-
accessible cars for
decision by June, when they it last December (DN, Jan), ate, its admissions policy, when
disabled people for have had time to digest firm arguing that there were not it will open etc. A two month
twenty five years. proposals from the working enough pupils to keep the public consultation period fol-
party sent out in mid-May. school open. Barnhill has 900 lows when anyone can object.
Implementation plans should places, 341 of which are filled. The case is then sent to the
Dial 100 for be well advanced by October But parents of Barnhill’s 15 Education Secretary who makes
Freephone when final ratification on disabled pupils have fought the the final decision.
Gowrings for your free RADAR’s side will be sought closure, arguing that it is the If Barnhill opts out it will
colour information pack. at its AGM. only integrated and accessible receive its funding directly
It is possible that RADAR school in the area. from the Government instead
will join the DLF at its west After an 8,000 signature of through the local education
London premises, at least for a petition and three months of authority. It is then up to the
short time. campaigning failed to change board of governors and the
“The conclusion of the councillors’ minds, parents pre- headmaster how the money is
working party was that the best sented a petition to the school spent.
governors in April asking to Parents hope that by opting
st RG490, Newbury, Berks.
Tel:[phone]. Continued on page 5 opt out. Continued on page 2
2 NEWS
Sponsor for DN’s helpline
A very generous offer by two to express our thanks to them. disabled people, their families
DN readers means that Lin Lin, who is blind and has and carers from all over the
Berwick’s telephone coun- cerebral palsy, is a qualified UK. Hundreds of people have
selling service will be able to counsellor and a Methodist used her service and appreci-
continue for another year. local preacher and has worked ated the help she gave them
Aubrey and Susan Besser for several advice-giving chari- (See DN letters, May).
from Hove, Sussex have agreed ties. She is married and has If you need help, or know of
to fund what they see as a step-children. someone who does, Lin is on
worthwhile service for disabled She offers help and advice - call Monday afternoons, 1pm-
people. particularly on personal, spiri- 5pm and Thursday evenings
Lin and the DN team want tual or sexual problems - to 6pm-10pm. Tel: [phone].
Right to
AIDS: Princess speaks
Magic moments: 40 children with special needs from Vernon
House and Manor Primary schools in London learned all
about music, magic, drama and dance in the Magic Planet vote from The Princess of Wales has spo-
project, run by the Tricycle Special Needs Team. The “spec-
ken out against the “ignorance
tacular finale” is on 7 June at 1.30 pm at the Tricycle The-
and prejudice” surrounding
atre. Free but book early. Tel: [phone]. SHEILA BURNETT your home people with AIDS.
At a London conference
Your comments please
They “Eabour ~ sParty «has organised by the National Chil-
launched a campaign to ensure dren's Bureau, she said: “HIV
that disabled people who can- does not make people danger-
The Museums and Galleries easy as possible for people with
not leave their home do not ous to know. You can shake
Commission is asking for com- disabilities to enter collections.
lose their right to vote. their hands and give them a
ments on its code of practice on
As well as publishing a hug because heaven knows they
disabilities. Available in large print, braille
report called Wanted: more need it. What's more, you can
The commision has drawn and on tape from the commission
polling power, a telephone hot- share their homes, their work-
up the draft to help museum at 16 Queen Anne’s Gate, Lon-
line has been set up. places, their playgrounds and
governing bodies make it as don SW1H 9AA.
Jeff Rooker, Labour’s their toys.”
shadow community care minis- She warned: “We can't think
Barnhill opt out? month. Although the parents ter, said: “There are six million of AIDS as someone else's
Continued from page 1 hope opting out will save the adults with disabilities in the problem and put it to the back
school, headmaster Alan Silver UK and many are housebound. of our minds. If we do we risk
out they will save the school. is more cautious: “There are no Labour wants to ensure the turning what is, in the end, just
Margaret Grindon, whose son guarantees in this world. But right to vote is not lost for another life-threatening illness
Louis, 11, was transferred to the parents believe this is a want of advance publicity.” into a plague which will create
Barnhill from a special school, unique school which is worth fear and suspicion in place of
said: “If the council can’t make fighting for and this is another Report free from Mr Rooker, goodwill and humanity against
it work, we can.” way to bring it to the attention House of Commons, London far more people than will ever
Voting papers go out this of the Secretary of State.” SWI. Hotline: [phone]. feel the effects of the disease.” Princess Diana _ RoBeRrT ABERMAN
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Disability Now June1991
Society chiefs resign
The chief executive and the want the management of this
director of finance and support organisation to have much
services of The Spastics Soci- more of a human face than it
ety resigned last month after has had. We do not see our-
evidence that they had broken selves as first and foremost a
their contracts was uncovered business. We are an agency
by an internal audit committee. providing human services and
Ken Young, 49, and Martyn that’s what we are going to
Dunleavy, 40, had set up a focus on.”
consultancy called Adapt Ltd Reaction to the resignations
and solicited business in the has been muted.
field of community care from North Housing, which has a
at least one local authority joint project with the Society,
without the knowledge or con- worth £25m, to provide com-
sent of the Society. The activ- munity homes for 500 people
ity started around February of with cp, said: “Nothing about
this year. the project has changed.”
“The Society’s executive Dorothy Blatcher, principal
council thought that it was administrator for social services
untenable for two senior offi- at the Association of County
Taking it to the t op: Albert Jackson of Hertfordshire Coalition of Disabled People delivering
cers of the Society apparently Councils, commented: “We
a protest letter to Downing Street about charges for community care in Herts.
to put their private interests have regular meetings with The JENNIFER HEATH
into conflict with the needs of Spastics Society particularly on
What happens when the media go?
our clients, parents, supporters care in the community and we
and partners, even though no have an agreement on funding.
Society funds were involved,” I would hope the relationship People disabled in major disas- Kings Cross fire. Mr KAW him out. “He _ had fallen
said chairman Derek Ashcroft. will not be affected at all.” ters get too much media atten- had no close family in Britain through the network of social
“The Council therefore felt Graham Ballinger, the Soci- tion when the accident and as well as the physical services,” she said.
that it had no option but to ask ety’s midlands regional general happens, and not enough long problems, he felt devastated Princess Anne, the College’s
for their resignations. manager, whose area includes term rehabilitation afterwards. and had a very poor self-image. _ patron, said people involved in
“It is the more regrettable, as 15 social services departments, This was the main message When he left hospital, social disasters experienced pain,
the Society has been through 30 health authorities, 30 local from accident survivors and services were notified and shock at becoming disabled and
an unprecedented period of groups and 30 Society shops, professionals at a College of transport arranged for the first loss of earnings, but many were
success and achievement over said: “The whole issue has had Occupational Therapists’ con- two weeks of physiotherapy. not offered counselling: “Some
the past three years since Mr no impact in the Midland ference in April. After that he stopped coming, problems may not be apparent
Young joined the Society, par- region. We had only one tele- For example, physiotherapist until one night he wandered for four to five years but people
ticularly in the fields of com- phone call. It’s just been busi- Alison Brown told the confer- into the hospital after dark. must know where to get help.”
munity care and _ education. ness as usual.” ence of a West African student Ms Brown and a_ friend Hospital staff, relatives, and
The resignations in no way Brian Bowry, a user of Soci- who was severely burned in the spent their free time taking friends need help too, she said.
affect our commitment to these ety services, said: “I think there
areas.” may be a short term effect on National protest resentative to act on their tive. By refusing to implement
Julian Sorsby, director of funding but people will forget Continued from page 1 behalf with social services and these sections the Government
operations, later confirmed that and things will go back to nor- 3 which gives them the right to is denying basic human rights
the existing policies would mal again. I think the the mat- rights of elderly disabled represent their needs during to vulnerable people who can-
continue. But he added: “We ter was dealt with in the proper people.” assessment, the right to a writ- not speak for themselves.”
manner.” MP Tom Clarke, creator of ten statement of that assess- ACT NOW also disputes the
Disability Now Until new executives are the Act, attacked the Govern- ment and the right to review. claim that it would cost £18m
appointed, company secretary ment in May (see page 4). The implementation of Sec- to run a system of representa-
Roy Limb will act as chairman The sections scrapped are: 1 tion 7, which requires authori- tives. “It would cost less than
Published by of the senior management and 2 which give disabled peo- ties to assess needs before £6m,” said Mary Holland.
The Spastics Society, team. ple the right to appoint a rep- discharging people with a men- “Because the representatives
12 Park Crescent, tal handicap from long-stay would work unpaid, the only
London W1iN 4EQ. hospitals, has been delayed. expense would be administra-
Tel: [phone]. Health minister Virginia tive costs, about 75p per week
Editor Mary Wilkinson Ten good reasons to send off for our Bottomley, announcing the for each representative. I can-
Assistant Editor free brochure. decision in March, said the not believe that is too much for
Alison Rowat cost of implementing the sec- a civilised country to pay.”
Reporter
tions would be too high and ACT NOW recently wrote
Rebecca Reynolds
they were not needed as their to the Prime Minister, asking
Editorial Assistant
aims were met by the Govern- him to overturn the decision.
Catherine Holloway
ment’s community care plans. But Mr Major said the situa-
Secretary FISH INSURANCE
Mary Holland said:“This is tion would only be reviewed
Tracy Scollin Freepost, PRESTON, PR2 2BR
nonsense. The new community again after community care has
Subscriptions 0772 724442
INSURANC care arrangements do not give been implemented in 1993.
Gayle Mooney, Manager
disabled people the absolute “That is far too long for us
Karen King, Assistant
right to an authorised represen- to wait,” said Mary Holland.
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Spastics Society.
Copyright [ABC] Telephone: We accept Access & Visa
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©1991 The
Spastics Society. MEMBERO F THE AUDIT
(BUORF CEOROALLAUTIO NS
Disability Now June 1991
House point
IN BRIEF
* Peter Thurnham, chair of
CTE
the Conservative Disability
Group, has extracted a
Woman gone missing
promise from ‘Treasury
Minister Gillian Shephard: Police are still
IN PA RLIAMENT the Government will see if searching for a
the existing VAT relief for young disabled
bathrooms can be extended woman who §
Tom Clarke fights back on to kitchens for the homes of went missing in
the Disabled Persons Act people with disabilities. April. :
Tom Clarke (Lab) raised an Tom Clarke: critical Peter Thurnham: hopeful Jo Ramsden,
adjournment debate in the 21 (above), was last seen in
Commons to highlight the when people are denied an the community have their ser- maintenance formula in the South Street, Bridport, in
Government's decision not to opportunity to seek their rights vices provided in that spirit of Child Support Bill more flexi- Dorset.
implement sections 1, 2 and 3 through advocacy and repre- partnership that has so shifted ble to meet the needs of dis- Ms_ Ramsden, who has
of the Disabled Persons Act, sentation, he said. our thinking about the provi- abled children. Down’s syndrome, was wearing
and to delay implementing sec- He quoted from the maga- sion of support." Lord Carter explained: a green tracksuit with a pink
tion 7. zine Community Care:"The She disagreed with Tom "There are three factors relat- band across the chest, a
He criticised the way the existence of a complaints pro-— Clarke over the value of a com- ing to poverty: unemployment, turquoise anorak, white trainers ~
announcement had been made, cedure is surely a poor substi- plaints system. She emphasised low pay and single parenthood, and was carrying a Liverpool
using two MPs to ask "planted" tute for the wide-ranging, one- that in community care plans, which are more likely to occur Football Club bag.
questions, MPs whom he sus- to-one advocacy envisaged users’ and carers’ interests will in the families of disabled chil-
pected had shown no previous under the 1986 Act." be considered. She said the dren and therefore put them at If you have any information
interest in disability matters. The charity MIND, he said, Government encouraged advo- risk of having financial please contact your local police
He said he was expressing thought the Government esti- cacy schemes. resources which are inadequate station or Dorset Police, tel:
the anger and disappointment mate of £18m to run a system She assured Tom Clarke:" for their needs." [phone].
of 6.5 million disabled people, of authorised representatives We want to ensure that all the He thought the child mainte-
their advocates and carers who "would be a small price to pay principles in the hon gentle- nance formula should contain a Equipment guide
have been waiting five years for for guaranteeing a basic human man's Act are developed in our minimum extra amount which A new 40-page pocket guide to
these sections to be imple- right." community care implementa- could be added to, according to help people navigate the “com-
mented. In reply, health minister Vir- tion. I call on him and all the need. plex and confusing” system of
Organisations like Act Now, ginia Bottomley said she recog- groups with which he works to Lord Henley said the Gov- equipment provision has been
The Spastics Society, Mencap, nised Tom Clarke's work with us to ensure that ernment are still considering published by the Disabled Liv-
Age Concern, RADAR and disappointment. "In our imple- community care is a success." options, but no decision should ing Foundation.
Deaf Accord have expressed mentation of care in the com- be expected until the Bill Funded by the Nuffield
deep disappointment, he said. munity there is no doubt that Child Support Bill: passes to the Commons. Provincial Hospitals Trust,
He challenged the Govern- the spirit and the principle of Government gives hope "Our aim is to do what is in Equipment for Disability covers
ment's reasons for not imple- the 1986 Act have been devel- Lord Henley, for the Govern- the best interests of children how and where to get a wide
menting the sections. He oped and elaborated upon to ment, raised hopes about an while being fair to the parent range of aids from artificial
claimed the NHS and Commu- ensure that the many frail, vul- amendment from Lord Carter paying maintenance," he said limbs and speech aids to incon-
nity Care Act and the Children nerable and disabled people in (Lab) which would make the Pauline Rona Graham. tinence and employment equip-
Act would not go far enough in ment.
terms of advocacy, representa- Quotes of the month Correction: My apologies for
tion and assessment. a typing error which changed From Haigh and Hochland, The
"What the Government has "In the absence of advocacy, the Act remains a lion without the meaning of a sentence last
Precinct Centre, Oxford Road,
done means even more depen- teeth." Tom Clarke (Lab) on hearing that the Government will not month. It should have read:
Manchester M13 9QH. Tel:
dence on the complaints proce- implement sections 1, 2 and 3 of his Disabled Persons Act 1986 and "The Government will also 061-273 4156. £2 a copy, reduc-
dure, but we are supposed to is delaying implementing section 7. increase the amount of capital a tions for bulk.
be talking about community disabled person claiming DWA
care, a partnership," he said. "The lion's share of the Act had been implemented". Health may have from £8,000 to Retired but still busy
There is no partnership minister Virginia Bottomley defending the Government's position. £16,000."
Now that Pat
Saunders,
writer and
MOTORBILITY FOR ALL broadcaster,
has retired as
director of the
Quality conversions for: Hampshire
Disability Information and
Wheelchair driver Advice Line (DIAL), he is to
become the first ever president
Wheelchair passenger
of DIAL.
Special Needs & Minibuses John Baker of the
Portsmouth Council of Com-
munity Service said: “It has
been a privilege to work with
Pat over the years. If it was not
PROBABLY THE BEST VALUE for him, DIAL’s Hampshire
branch would probably never
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Disability Now June 1991
NEWS 5
Yuppie
Still time
phone tax
to catch
“unfair” the comp!
Have you entered yet
Before Chancellor Norman
for DNs 1991 Christ-
Lamont starts to tax “yuppie
mas card competition?
phones” he should spare a There’s a £100 prize if
thought for disabled people, you win and the fun of
according to one angry user. seeing your design
Jennifer Reeves, 32 from printed on at _ least
Surrey, who is also a 10,000 cards. Winners
wheelchair user, is furious at and runners-up will be
plans for a £200 tax on the offered a free trip to
phones' private use. “Mobile London to receive their
phones aren't a luxury, they're awards.
DN is very grateful to
a lifeline for many disabled
the advertising agency
people. They're particularly
pteaes ke | DMB&B for donating
important because wheelchair Swinging sixties style: Glynn Vernon, Alison U nwin, Janet Kaur and Emma Millar at the Sil-
the prizes and framed
users can't reach emergency ver Jubilee party of The Spastics Society's Broadstones hostel in Birmingham in April.
awards.
phones on motorways.” Glynn, an executive council member, joined past and present residents and staff. NIGEL DICKINSON
Judging the competi-
Having been made redun-
Shout out about speech needs tion will be Richard
dant from her job as a legal
Morphet, keeper of the
assistant, she can no_ longer
modern collection § at
afford her phone. London’s Tate Gallery,
“T am paying VAT on both Your child has a legal right to that they therefore have no therapy, tabled by Conservative Valerie Lang MBE,
my calls and my equipment. It speech therapy and if the educ- duty to provide it under the MP John Hannam, thousands executive council mem-
is too much and I will have to tion authority doesn't provide it 1981 Education Act. of leaflets prepared by the ber of The Spastics
sell the phone. With Mr Lam- you should consider court The campaign, which Children's Legal Centre have Society, sculptor Adam
ont planning to introduce a flat action, Says a new campaign. includes Deaf Accord, MEN- been distributed. Reynolds, DN art critic,
rate tax I fear many other dis- A 1989 Court of Appeal rul- CAP, and The Spastics Soci- Speech therapy - claim your and editor Mary Wilkin-
abled people will be forced to ing held that speech therapy ety, iS urging parents to child's educational rights, son.
take the same drastic action.” was in most cases an educa- challenge such decisions, if explains what children are enti- For more information
check the poster
Ms Reeves believes compa- tional rather than a health necessary in court. tled to and how to get it.
inserted last month
nies could help disabled people responsibility. As well as a parliamentary
with DN or ring 071-636
to afford a mobile phone by But, according to campaign- motion urging the Government SAE to Children's Legal Centre,
5020 ext 245.
giving a discount or offering to ers, some education authorities to ensure LEAs fulfil their legal 20 Compton Terrace, London
Closing date: 24 June.
pay part of their VAT bill. say it is “non-educational” and obligation to provide speech Nl.
RADAR/DLF merger merger out of desperation. to all of us as though there is a Deaf rights manifesto
Continued from page 1 There’s huge strength in each potential to do even better than
organisation. In this case one we do now and offer a much
benefit to disabled people was plus one equals more than stronger service to our users.” Deaf Accord, a consortium of demands are the introduction
to be achieved by merger and two.” Both directors gave as an deaf organisations, which of anti-discrimination — laws,
our executive committee Paul Brearley, director of the example an improved informa- includes the British Deaf Asso- more specialist services for
approved a merger in princi- DLF said: “We are at the stage tion service, with the DLF ciation, is asking all political deaf/blind people, a_ better
ple,” said RADAR’s director of talking about a merger, but offering a data base and parties to support its new gen- funded hearing aid service, and
Bert Massie. there’s a lot of work to do on RADAR membership provid- eral election manifestio. more access to technology and
“This is not a takeover or a detail. At the moment it looks ing a wider constituency and Among’ the manifesto's interpreters.
local feedback.
Paul Brearley thought the
new organisation would be the
same size or even bigger, with
WHEN YOU WANT
more personnel staff.
He saw no reason for the
combined budget of the two TO GET OUT
organisations, running at about
£2 million, to change radically
in the short-term, although he
admitted that future Govern-
ment funding was “on our
mind”. This year RADAR gets
£225,000 and the DLF has WE'VE GOT
asked for £337,000.
Asked if he thought the A WAY IN!
Government might be tempted
to cut its total funding to a
For you and
joint organisation, Paul Brear-
ley said: “There’s an argument your wheelchair
for giving more money because Only Car Chair Ltd offers wheelchair-seated passengers
we are doing things more effec- the choice between sitting in the front or rear of a vehicle.
tively. I don’t think there is a
And only Car Chair Ltd allows the disabled driver to choose
sound reason for cutting.”
between sitting in their own wheelchair or in our specially
No name has yet been found
The Mangar Genief for the new _ organisation, designed Carchair wheelchair system.
C
though it is agreed this is a pri- an (f ors,
ority.
> Who will be director has not
been broached either. Bert
Massie was appointed THE MOBILITY SPECIALISTS
RADAR’s director in April
1990 and Paul Brearley was co- Car Chair Limited,Freepost (BR1032), Dept.D. N.
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FACE TO FACE YOU STAND MORE CHANCE!
said. “I’m having a good time”.
Disability Now June 1991
6 BREAKTHROUGHS
Gut feeling harmless. But if the bacteria versity College and Middlesex .of this work are very exciting age age of death is 32.
reaches other parts of the body School of Medicine. and important and we hope it In 1989 an consortium of
it can, in certain genetically The research team, led by Dr will lead to better treatment.” research groups was formed
on arthritis
susceptible people, trigger the Alan Ebringer, hope they. can Marfan find and nine laboratories in seven
production of antibodies that reduce inflammation and stop countries started looking at 22
Doctors may have _ tracked attack the joints, causing the disease from progressing by chromosome pairs for the gene
down the major cause of swelling and stiffness. using antibiotics to eliminate Scientists are close to finding that causes Marfan.
rheumatoid arthritis to a com- the gut bacteria. The theory is - the cause of Marfan Syndrome, Finnish scientists narrowed
mon gut bacteria. now being tested on 300 a condition that affects over the search down to chromo-
Four studies have shown patients. 5,000 people in Britain. some 15, while the American
that people with arthritis have Dr Ebringer said: “This treat- With Marfan Syndrome the team discovered people with
high levels of antibodies to a ment will not undo the damage connective tissue which sup- Marfan do not have enough
bacteria called-Proteus mirabilis that has already been done by ports and surrounds internal fibrillin, a protein found in
in their blood when the condi- PATRICK BAGLEE the disease, but hopefully it will . organs is weak, causing prob- connective tissue.
tion is “active”. Much of the initial research stop further damage.” lems with the eyes, heart and As the Marfan gene and fib-
When the bacteria is in the has been done by the Depart- The Arthritis and Rheuma- skeleton. rillin gene occur in the same
gastro-intestinal tract it is ment of Rheumatology at Uni- tism Council said: “The results Without treatment, the aver- region on chromosome 15, sci-
entists concluded that the Mar-
fan gene and fibrillin gene may
be one and the same.
Reseachers are now trying to
determine the sequence of
amino acids that make up a
“normal” fibrillin gene. Once
this is done, researchers can
identify the faulty codes that
people with Marfan have.
Researcher Dr Anne Child, a
clinical geneticist at St
George’s hospital in Tooting,
said: “At the moment there is a
problem of identifying the syn-
drome because the symptoms
develop slowly. But once we
know which children have
inherited the gene we will be
able to offer preventative care
by protecting their back with a
brace and strengthening the
aorta through surgery.”
Marfan Association, c/o Dr
Anne Child, Department of His-
pathology, St George’s Hospital,
Tooting, London SW17 ORE.
Alzheimer’s
testing
Some people with Alzheimer’s
disease could have their mental
abilities temporarily improved
by a new drug, according to the
Institute of Psychiatry in Lon-
don.
Professor Raymond Levy
studied a group of 89
Alzheimer's patients who were
given a drug called Tacrine
over 13 weeks. It produced
“significant symptomatic
improvements” in 45 per cent
of those with a mild to moder-
ate form of the condition. Of
the 65 patients who completed
TRAFIC. . MASTER the trial, 29 showed an
12 seats, 3w heelchairs _ 15s ea5tw heselc,hai rs improvement in their mental
from $11915 ex-works from 518470 exworks abilities, becoming more atten-
tive and alert.
Dr Sarah Eagar, joint author
of the study, said: “The drug
improved the patients’ percep-
tual and attentional functions
EXTRA FREEDOM & FINESSE
rather than their memory. It
3-5 seats, |w heelchair from £9215 ex-works
improved their ability to
understand simple explicit
rules but not complex ones and
their abilities to do everyday
tasks were not improved.”
For further information
Tacrine is an important first
contact Frank Greensmith step in the treatment of the dis-
Telephone: [phone] ease. But Dr Eagar said: “It is
Fax: [phone]
not a cure and will not reverse
~ THERE'S MORE
or call into your nearest the disease process. Tacrine
TO: LIFE WITH
Renault Dealer can improve symptoms for a
year or two, but there is evi-
dence that the drug becomes
less effective with time and that
patients will eventually deterio-
rate.”
Disability Now June 1991
ACCESS 7
Thanksgiving service forces action at St Paul’s
Tim Russell reports side of the cathedral to the means either making arrang-
The Corporation of London same height, which will give ments in advance or having an
has announced plans _ to wheelchair users level access all able-bodied person with you to
improve access to St Paul’s the way to the lift. alert the staff.”
cathedral. Judy Fleck, the Corpora- Charles Moore has suggested bfae bei
aod
The proposals follow talks tion’s access officer, said: having an entry phone and an
between the Corporation and “The cathedral is a grade automatic opening device fitted
the John Grooms Association one listed building but we are to the door that leads to the
for Disabled People. keen to make it as accessible as lift.
Access to the building is so possible. The removal of the Wheelchair users would
poor that when the association steps has become part of our press a buzzer when they
held its 125th anniversary accessibility programme for this arrived and cathedral staff
thanksgiving service at St year and we are now only wait- would be able to open the door
Paul’s on 23 April, 140 ing for the approval of the automatically without leaving
wheelchair users entered the cathedral and English Her- the cathedral.
building only because two giant itage.” A security camera could be
ramps were fitted to the north Martin Stancliffe, surveyor fitted to make sure only people
and west entrances. of the cathedral’s fabric, with disabilities entered.
The temporary ramps cost said:“We are pleased the Cor- “The automatic device
£5,000 for the day, paid for by poration has finally decided to would save everyone a lot of
National Car Parks. get rid of the steps as it is time and energy and make vis-
Charles Moore, chief execu- something we have wanted iting the cathedral so much eas-
tive of John Grooms, was so done for a long time. We are ier for disabled visitors,” said
concerned about the lack of looking forward to seeing the Charles Moore.
access he contacted the cathe- plans.” The plan has already been
dral and the Corporation Charles Moore commented: discussed by the City of Lon-
(which is responsible for the “Although we are very happy don’s Access Group and Judy
exterior and gardens). that moves are being made to Fleck said it would be “seri-
“There is a wheelchair lift on remove the steps, wheelchair ously considered.”
the south side of the cathe- users still face problems getting Mr Stancliffe confirmed:“We
dral,” he said. “But it is not into the cathedral. will consider the plan for an
signposted and difficult to “The door that leads to the entry phone but its viability
reach. The only way is to go lift is always locked, which would depend on the cathedral
through the cathedral gardens means that once you have having enough staff to man it. An 80ft ramp was the only comfortable way in. ROBERT SONE
and climb up two steps, some- reached the door you have to “Rather than make piecemeal
thing which is very difficult for go and get a verger to unlock improvements we want to take made as soon as possible. showed that people with dis-
wheelchair users.” iDhe an overview of the cathedral’s Nancy Robertson said: “St abilities can play a big role in
The Corporation now plans “Finding staff is no easy access problems and address Paul’s is a national monument the life of St Paul’s. We are
to remove the two steps at the matter,” said Nancy Robertson, them as a whole.” which should be enjoyed by now keen that the cathedral
entrance to the gardens by rais- a wheelchair user and council But the John Grooms Asso- everyone. and the corporation should
ing the pavement on the south member of John Grooms. “It ciation wants improvements “Our thanksgiving service enable us to do that.”
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Disability Now June 1991
8 MOTORING
Gti look-a-like is safe, secure and fun to drive
DN’s motoring correspondent David Griffiths tries out the little-known Volkswagen Golf Driver 3-door automatic
with stiffened lower limbs and
Except for conversions on the
for wheelchair users, with easy
Transporter and Caravelle
stowage behind the front seats
bases, Volkswagen has had a
and a good range of seat adjust-
low profile where British dis-
ment. Seating is comfortable
abled drivers are concerned. It
and supportive too, and the
is as though they have been
vehicle lends itself to a wide
afraid to suggest that some of
range of modifications includ-
us may be pleased to try one.
ing the Kempf ring accelerator.
Indeed, not so long ago, I
On the minus side, the
became embroiled in an argu-
gearshift selector (rather short) |
ment with a senior VW
employee over the very exis- is somewhat stiff, and the rear |
sill to the hatch really needs to |
tence of the Golf Driver - he
insisting that it was not avail- be lower in keeping with some |
of its competitors.
able and I that it was. Since I
had just driven some 150 miles Whatever your feelings about |
in the very vehicle, I won. such things, there can be no ©
That VW _ Driver 3-door Golf Driver: denying that this car is aptly |
automatic came from the same named, for it is truly for the
stable as this latest model with power-assisted steering is there more lively, yet less urgent. nice chunky feel. The accelera- real driver who enjoys getting
power-assisted steering - the to do the work for you. For However, it was a false impres- tor actuation was by means of a the most from behind the
Absolute School of Motoring, some it will not be light sion, as I soon discovered when ~ _ cable, so knee-room intrusion wheel in safety. It looks good
which specialises in disabled enough, but it is all it should glancing at the speedometer. was minimal. and feels nice, and gives your
driver tuition. be for maximum control with Sure enough, it was hovering - Jim Doran Controls may not ego a lift when you find your-
Today VW is much more minimal effort. on 65mph as the winding class be: known to many readers, but self alongside a Gti.
orientated towards the disabled All round vision is pretty B_ Shropshire country road this’ small, Coventry-based It is economical too by all
driver: its mobility brochure good, although the thick rear appeared to be passing by at company specialises in individ- accounts, although my brief |
has this car on the front cover. pillars offer some blind areas about 40. ual modifications involving spin did not allow me to check
The first thing which strikes and the rear end is a bit high. Safe and surefooted, with some pretty innovative technol- this out.
you is the outward appearance, The Golf has been largely vice-free handling, it is equally ogy, and Jim has just com- I can’t help feeling a bit
for the Driver is little different unchanged since it first arrived at home on the motorway or pleted a_ second tiller-bar envious of the lucky learners
externally from its famous and and the body shell is beginning down a muddy track, and you conversion on a conventional who will get their experience at
much-sought-after brother, the to show its age. On the other would need to be pretty ham- vehicle, which should attract the wheel of this car. My Mini
Gti. Four headlamps and a spe- hand, it is unmistakably Volk- handed to get into trouble with those who drive invalid trikes. . just didn’t have the same class.
cial grille make it stand out swagen - solid, attractive roadholding of this calibre. Returning to the Golf
from the basic models, or even enough without pandering to The test vehicle was fitted Driver, what are its attractions Golf Driver 3-door automatic
the CL: whimsical fancies, functional with push-pull hand accelerator in comparison with its rivals? costs £10,590.66 (inc. VAT and
It’s a heavy, solid looking car and built to do the job for and brake by Jim Doran Con- Basically, solid engineering car tax). Contact VAG UK Ltd,
and, sitting as it does on low which it was intended - getting trols and incorporated a small coupled with VW reliability Yeoman’s Drive, Blakelands,
profile tyres, gives the impres- places safely, swiftly and for toggle switch in the hand grip and a long life. Milton Keynes MK14 SHR, tel:
sion of needing some muscle to many years to come. for operating the indicator. Although available on the (0908) 601187.
haul it round anything like a On the road, I was struck at Brakes were somewhat on Motability leasing scheme, it is Absolute School of Motoring,
sharp curve. first by the softer feel and the heavy side, but stopping really not the sort of vehicle for Birminham, tel: [phone].
Nothing could be further lightness of control over the power was excellent, and the this job. A three-year-old Golf jim Dorley, tel: [phone].
from the tOrutuh, rth oungh,e fwor thes mparevliouls c mod elr. hIta feslt mauchb igco nftreolas tufelrt ep.os.it.iv e with a hwiatrhd lyT3 h6eb,e 00g0u nt hmriteloee s-s deotrtoelrec orind.ve edr sihoans DRoona'dt Sfhoorgwe,t : 211-92931 JMuonbei li(steye
offers superb access for those What's On, page 22).
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in the ‘Car of the Year 1991’, the new CLIO real sense of freedom.
Renault Clio. In fact, most models in the Renault range — big 1200mm x 735mm platform
Our years of experience refining and can be adapted to make the disabled and 300Kg capacity
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have made the Renault Clio our best yet. with modifications by specialists including
The Clio gives you big car comfort in a small hand controls, swivel seats and flip-over accelerator. See the new Slide-A-Way at the
car that’s pleasant to drive. Power steering is Renault is an approved manufacturer on the
Mobility Roadshow,
available as an option on the RL 1.9 litre diesel Motability Car Purchase Scheme so if you receive June 21 to 23, 1991. canning host
and both the RT 1.4 and 18 litre petrol versions, a mobility allowance you're eligible to choose
and a four speed automatic gear box is optional from most of the Renault range and purchase —_
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The five door Clio can also be fitted with CAR OF THE YEAR Ask your local Renault dealer
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Disability Now June 1991
SPORT 9
Straight set climax to tennis
Chris Illingworth of Balham Sixteen people entered the player, Simon Hatt of
overcame a determined chal- novice event, won by Steve Wandsworth. It was a repeat of
lenge from Leicester’s Jayant Roche. last year’s final but Jayant
Mistry to win the 1991 The most exciting match of stunned his opponent by com-
National Championships for ing back from 2-5 down in the
Wheelchair Tennis in May. deciding set to win 8-6.
The event, at the Delta Cen- “That was one of the best
tre in Swindon, attracted the matches [ve ever played in,”
top British wheelchair players. said Jayant. “I was disap-
Chris did not drop a set in pointed to lose my title but full
his match with Jayant, winning marks to Chris. He’s an excel-
6-2, 7-5. It was his third lent player and its great to see
national title in four years. him back in form.”
“The match was closer than Wheelchair tennis fans will
the scoreline suggests,” said get another chance to watch the
Chris, who was forced to drop top players when they compete
out of last year’s event with Illingworth: Balham's best for the British Open title at
two broken legs. Bishops Park, Fulham, on 31
“The most pleasing thing the tournament was the semi- July.
about this championship was final between the 1990 cham-
the large number of new play- pion Jayant Mistry and National Wheelchair Tennis
ers coming through.” England’s highest ranked Association tel: [phone]. Serving it up: Jayant Mistry at the baseline BRIAN SHAW
1991 of competing in the Boston conditions on the way back
Marathon the week before. were terrible. There was so
Welshman Chris Hallam's much wind it slowed me
Marathon hopes of winning a third Lon- down.”
don Marathon were wrecked Chas and Mike both coach
by a puncture early in the race. youngsters in London. Chas
best ever The pit-stop lasted for five was delighted that one of his
frustrating minutes but he still athletes, Tim Christie, 15, from
carried on, finishing 19th. Merton, won the boys’ Mini
The 1991 ADT/BSAD Lon- Chas Sadler, a member of Wheelchair Marathon.
don Wheelchair Marathon was the London Wheelchair Melodie Warren, also of
the fastest and most exciting in Asa Marathon Committee, had a Merton, took the girl’s title.
its nine year history. good race, finishing in 19th The women's race winner
Frenchman Farid Amorouch place with the same time as the for a second year was pre-race
beat the favourite and _ last Oops! Gremlins robbed “Mike Karaphilli desu (lefi)i of his winning woman runner, Rosa favourite Connie Hansen. The
year’s champion, Bo Lindkvist rightful place in the picture on page 5 of last month's DN so Mota, and also found time to occupational therapist from
by only three seconds. He cut here he is again with Chas Sadler. ROBERT SONE play host to the race’s foreign Denmark, who has a string of
four minutes off last year’s wheelchair competitors with athletic successes to her credit,
record by the Swede Hakan land, Wales and Zimbabwe tak- the pack in the final 200 yards his fellow competitor Mike including five gold medals in
Ericsson with a time of | hour ing part. to snatch a memorable victory. Karaphillides. the Olympic Games in Seoul,
52 minutes and 52 seconds. Five athletes took the lead at Daniel Holding was the first Mike came 40th with a time was in formidable form. She
The race was the most inter- Westminster Bridge, including Briton to finish in sixth place of 2:57:19. He said: “The race trimmed the course record by
national ever, with athletes favourite Bo Linkvist, Hakan in 1:54:39 still feeling the effect began very well for me, but the six minutes to win in 2:04:40.
from Austria, Canada, Den- Ericsson, Jean Francois Oitevin
mark, Eire, England, Germany, and Daniel Wesley. But it was THE NEW VOLKSWAGEN CARAVELLE
Gibraltar, Holland, Switzer- Amorouche who broke clear of
BY INVATRAVEL CONVERSIONS.
A change for
the better!
Next time you’re travelling across London and need to get from
one Main Line terminal to another, try Carelink. It’s an hourly
door-to-door bus service between stations with cheerful little red Come and see the new Caravelle on the Volkswagen
and yellow buses. They're wheelchair-accessible and they’ve got
friendly patient drivers. stand at the Mobility Roadshow June 21-22-23.
Carelink is especially for people who find ordinary buses or the
eUxnadmeprlger)o.u nAdn d difafti cVuilctt otroi am aannad geE us(tyoonu mCiargehlti nbke bcearcroymiengs laung gaagire lifnokr, Various options of wheelchair access available on
mHeeaetthirnogw .u p Twhitehs et heb usferse,q uetnoto , Aairreb usn ows erwvhieceelsc htaoi ra nda ccfersosmi ble. this super new model.
Fsopre cimaolr ef aciinlfitoiremsa toino n Loanbdoount’ st hebsues esa,n d other Contact Paul Cassidy 0704-231081
Underground and Docklands Light Railway, call
London Transport’s Unit for Disabled 66 Knob Hall Lane, Southport.
Passengers on 071-222 5600. Or write to the
Unit at 55 Broadway, London SW1H OBD. one
Disability Now June 1991
10 LIVING
aking the break
Relationships (5): Nick Atkinson took a bold step when he exchanged
parents and home for a college which had no experience of disabled
students and where everyone was a Stranger
But the college promised care: a nurse comes in weekday nervous. They asked the
improvements: ramps were to mornings, one every night college if they could stay for
be installed, a room converted, around six o’clock and one on several nights at the beginning
and a linen cupboard just Sunday mornings. of the first term. I had no say
opposite would become a In addition to my allowances in that and in a way I felt my
shower and toilet. I receive half a grant and the toes were trodden on. It was
Terry Robinson, Muscular same parental contribution as nice to have them but difficult
Dystrophy Group's family care my twin sister, Jane, who is at to make new friends. Dad
officer in Cambridge, agreed to Newnham College. would have stayed, but Mum
supervise the modifications. Recently I received £250 realised after a couple of days
The college was aware of its from the Snowdon awards to that I was coping all right and
lack of facilities for disabled help pay for an electric they went.
people, had intended to put wheelchair. A week later they set off on
some in place, but had no one I don't think I should have a grand tour of Scotland - talk
who knew what was needed. to use my mobility allowance about incommunicado!
The result is a friendly
physical environment for me
and a college facility that suits
a disabled person’s needs
rather than one created by a
designer with no personal
experience who says what
"We do converse with other species": Nick with economics disabled people want.
student Frances Kaplan and fellow law students Steven There remained the
Coren and Michael Harrison outside the college. PHIL SAYER question: where would the
help I need come from?
Planning to leave home is a support I needed. Am I mad? Everyday tasks people take
daunting task for anyone. I come from a legal family for granted are a problem for
When you are disabled and (my father is a solicitor) so it me - cooking meals, getting
your destination has never had was no surprise to anyone that washed, etc. At home my
people in wheelchairs before I wanted to read law. parents had been there. I felt it
(so no facilities exist), there are But once I had decided that would be wrong to turn to
those who would say the move Downing College was the kind ’ students for help; nor did I
borders on madness. of place I could see myself in want to have to rely on them. Coffee helps the Constitution? Nick and Steven take a break.
Last October I went to for three years, my parents The obvious option was
Downing College, Cambridge. wanted to check that the idea employing a nurse, but money? for care. I have an application My sister and I now ring
I am 19 and have Becker was feasible. There are many allowances for with the DSS for a £3,000 once a week and report our
Muscular Dystrophy, a Looking round the college it the disabled student, but it’s a grant for nursing. continued existence and our
progressive muscle disorder, was obvious to us that the hard slog securing them (I am The college was fine struggle to stay in the black.
which put me into a facilities left a lot to be still appealing for night time physically, the support services I see Jane every now and
wheelchair three years ago. I desired. Only three buildings attendance allowance). were in place, but all this then. It is reassuring to have
have left the security of home, were accessible - a reading I have to use my mobility would mean nothing if I her just down the road and, no
my friends and a mainstream room, the dining room and the allowance as well as my couldn’t cope. doubt, for my parents too.
school which offered all the bar. attendance allowance to pay for My parents were naturally When they departed I felt a
bit nervous -"it’s only you
kiddo: you’ve got to set up
down here and get to know
LSB COMFORT SHOES
people." You know no one to
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when the lights go out at night
and there’s no one passing the
—mz=™~ window.
CAMP But that only lasted a couple
of days. I started to go round
in groups - lots of events were
organised in the first week -
Orthopaedic footwear in stock sizes and then lectures started.
During that first week I
@ Rapid ex-stock delivery tried to put myself in other
people's shoes, thinking how
M Split pair service across the
difficult it would be to come
range up to someone sitting in the
corner in a wheelchair. I
@ Consistent, reliable realised I would have to make
most of the first moves if I
quality
was to make friends.
LSB Comfort shoes By and large I've been
accepted. Maybe those who
from Camp
haven’t accepted me dislike my
Available
Products set the manner, find me a bore or
ex-stock from
whatever - maybe it isn’t the
standards by which
wheelchair.
other stock orthopaedic I feel I have many very good
footwear is judged. First in the field and PRODUCTS friends, friends who are keen
to understand disability and
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Tel: Winchester [phone] Fax: [phone] know Nick Atkinson and not
the blue wheelchair in the
corner.
If ’'m mad, I’m glad of it.
Disability Now June 1991