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Eve Buchanan – Project Leader
Tel: 07983 326745 Email: eve.buchanan@circlesnetwork.org.uk
Accentuate the positive (article in Belfast Telegraph, Monday, December 11, 2006)
Poleglass woman Anita Gracey, who has a disorder of the A new project that aims to help disadvantaged parents has been set up in Northern Ireland, thanks to an anonymous donation to Circles Network, a voluntary organisation based in Warwickshire. "When I heard that a new project was being set up to help parents like myself who face difficulties, I was absolutely delighted. "Having been diagnosed with a progressive disorder of the nervous system in my 20s, which has resulted in my having to use a wheelchair, and becoming a single mother, I know only too well how much such help and support is needed. "The Positive Parenting Project, which has been established by the voluntary organisation Circles Network, aims to offer support, education and advocacy to parents who have physical and/or sensory impairments, learning difficulties or mental health issues.
"A great aspect of the support offered is that it will be determined by
the individual needs of the parent - which, of course, will differ from parent
to parent. When you're a disabled parent or struggling to cope on your own, you
don't know where to turn or what help is available but hopefully this project
will change that. "I was formally diagnosed with Friedreich's ataxia when I was pregnant - I was 27 years old - but I really knew I had it long before that. Three of my six elder siblings have it and I suspected that I did too from my teenage years.
Genetic disorder
"It is a genetic condition named after the doctor who first identified it
in the 1860s and is a slowly progressive disorder of the nervous system and
muscles. My parents are both carriers of the gene so, although they did not
develop the disease, it was passed on to four of us. My eldest sister was the
first to show symptoms. It took a while to diagnose and other conditions were
considered before Friedreich's ataxia was confirmed.
"The thought that I might develop the disease was not a big worry, perhaps
because the others developed it first and I knew what it was like. It was very
slow to develop. During my teens, most people didn't notice anything but I did,
because I wasn't good at handball or running and such like. People thought it
was because I was smaller.
"Towards the end of my school years, a teacher noticed I was particularly
slow at taking things down from the board - it affects handwriting, everything
really.
"After my writing, my walking was affected. It makes you unsteady on your
feet, so I was sometimes accused of being drunk when I was actually sober.
"However, I think that having the illness has given me more opportunities.
I went to university in my 20s, which I'd probably never have done. If I'd been
able-bodied, I would have left school, got a job and got married. Instead, I
discovered that higher education was something I would love to do - and could
do. And I think I enjoyed university more because I was that bit older than a
school leaver.
"As it turned out, I left with a degree and a baby. My then boyfriend was
tested to make sure he wasn't a carrier of the defective gene. Thankfully he
wasn't but, if he had been, our child would have been in danger of developing
the illness.
"When Emmett was born, I was still walking and the time came during the
next couple of years when I had to use a walking aid. It was on
September 11, 2001, that I started
using a wheelchair. I had flu that week and just started using it because I was
feeling sick. Using the chair made it much easier for me to get around and
helped me stay on top of things. Now I use it all the time.
"Being at university was a great experience. I studied social policy at
the University of Ulster,
Coleraine. I found out I was pregnant when I was doing my dissertation in my
final year and was very upset, as you can imagine. My tutors said I could take
time out and finish my degree later but I decided to finish it that year.
"The university was very supportive. They gave me an extra person to come
in and take notes for me. They gave me extra time in exams and I was allowed to
do the exams on a computer as my writing is very scrawled, especially when it's
done quickly.
"Living in Portstewart with my son was very isolating, as all my family
and friends were in Belfast,
but Emmett was a very good baby, which helped enormously. When I returned to
Belfast, I lived with my parents (my relationship had broken up) and they loved
having my son around. In 1999, when a house became available to rent just around
the corner, I moved in there.
"I asked
Social
Services to assess my needs and see what help I could be
given. I wanted help with cleaning, particularly the floors, because, although I
could do it, it took me all day and I found it very tiring. Unfortunately, I was
assigned a cook, which wasn't exactly what I wanted.
"Through studying social policy, I had found out about direct payments
legislation and, although I was initially told it wouldn't suit me, I pursued
it. Information is power and, with the help of the Centre for Independent Living
in Belfast, I found out more
and more about what could help me.
"I believed direct payments were ideal for me. The health trust pays money
into your bank account and you can use it to employ someone to do cooking,
cleaning or go out and get messages or whatever time allows. It's very flexible
and I've been using the scheme since 2001.
"Now I help to advise and train people on how the scheme works. The Centre
for Independent Living teaches people the history behind direct payments and I
help by talking about my case.
"As well as this, I also work for Leonard Cheshire, an organisation which
provides care and support services for disabled people across the
UK.
"As a mentor, I work one-to-one with people and, as a facilitator, I work
with small groups. It's very rewarding to speak to people in my work. You have
to take your opportunities when they come along with both hands.
Revealing
"I had heard about the Positive Parenting Project through the charity
Circles Network, the voluntary organisation that has led the way in the
development of circles of support in the
UK.
"It was set up in 1994 with the educational objective of building
inclusive communities and has since expanded rapidly and now supports thousands
of people each year through its many circles of support, training programmes and
specific projects.
"Its work supporting disabled parents in
England and Wales is well known.
Thanks to an anonymous donation that was made after Circles Network recently
presented its work at a conference, it is now available here through the PPP.
"The project acknowledges that the safety of the child is of paramount
importance and will work alongside parents, taking into account their individual
needs.
"I think it's wonderful that the project has been established. It will
show people how to get help and what options are out there because one solution
won't suit everybody. Some parents may just want someone to talk to while others
may need more practical solutions.
Not held back
"Having pursued help and support, I would encourage others to do the same.
Find out about direct payments. Don't be put off by thinking it's a big task.
The system works so smoothly when it's up and running.
"Far from thinking my illness has held me back, I would actually say it's
the best thing that's happened to me. I've got a really good job. The company is
really supportive to me as a disabled single mother. I have an excellent child
and a great family and I'm very thankful for that.
"Emmett is a joy to have around. He's very sporty. I've always encouraged
him to do positive things he really enjoys. We go on holiday together - we've
been camping - and don't let my illness infringe on our lives. We actually do a
lot more than we probably would if I was able-bodied. I'm focused completely on
him. "My illness will progress. Maybe it will become harder to get in and out of the chair and to be more independent. I might need help getting in and out of the bed. But I'll deal with that when it comes."
Anita Gracey
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