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So much more than ‘the lady in the wheelchair’: Regaining my independence by sharing my lived experience of disability – Judith Margolis, Director of the Cambridgeshire Alliance for Independent Living

Alfie - Support Dogs

Judith Margolis is a director of the Cambridgeshire Alliance for Independent Living, and Chair of Disability Cambridgeshire, where she works as a telephone advisor once a week. Previously she worked for the Open University Business School, where she was head of the Centre for Strategy and Marketing, and wrote course materials for their marketing and management courses. In 2008, after two bouts of breast cancer, Judith developed cerebellar ataxia and retired early.

Judith Margolis
Judith Margolis

“…Supporters of the Social Model of Disability believe that it is our surroundings and the way we are treated that ‘disable’ us rather than the conditions of our body. I struggle with the term ‘disabled’ – just because I use an electric wheelchair, doesn’t mean I am any less of value than anyone else…”

My story

Most people at my local community know me – if not by name, by my description – I’m ‘the lady in the wheelchair’ and perhaps they would have met my little dog, Alfie.

It wasn’t always that way, up until 2002 I was still on my feet, admittedly, I was struggling, I told myself two bouts of breast cancer had taken their toll, but I was fighting back and things could only get better – couldn’t they?

But then the falls started – I began to have double vision, my speech started to slur and I had to fight desperately not to fall asleep in the car on the way home from work. It became impossible for me to keep up with my busy life. I missed deadlines at work, stopped seeing my friends and was too tired to spend time with my family.

When I complained to my GP he sent me for tests – we all expected the worst – the cancer had come back and held our breath until the results came through. No big ‘C’ this time – we breathed out – but there were some strange cells in my brain that needed looking at – and another sharp intake of breath. Eventually I was diagnosed with multiple system atrophy (MSA) – a long name that describes a horrible degenerative neurological condition that would progressively affect my mobility and give me five years to live.

Learning not to worry about things I could not change and finding I have the power to choose how I feel

The strange thing is that throughout the roller coaster of battles with my health it never occurred to me to ask ‘why me?’ Perhaps it was because I was too busy going to hospital appointments and having treatments – there was a point when had to accept my own mortality but I just got on with the job of coping with life and I was making the best of whatever time I had left. I also learned not to worry about things I could not change.

Eight years ago, I went for my usual yearly check-up – my health was still good. I had new tests that weekend and the specialist were so pleased with my progress that they changed the diagnosis to cerebellar ataxia – my mobility would still degenerate but at a much slower rate. The more I think about it the more I think it’s my own personal miracle!

Throughout this time there were difficult periods, having to retire and give up my professional career that I had fought so hard to get, giving up travelling and not being trusted to be alone with my new grandson in case I fell – or even worse dropped him!

It was very difficult watching my family trying to cope with yet another one of my illnesses – this time there was no cure, and the certainty that my condition would only get worse. There were dark times admittedly, but the only person who suffers in those times is me… I know that I have the power to choose how I feel, so I chose to feel positive rather than negative.

There are so many good things that have happened to me as a result of my disability. The best is my wheelchair, I know it sounds funny but it was so hard to cope before, I was so poorly, tired and dizzy all the time, but once I sat down, life became much easier.

My wheelchair: The best thing that happened to me

CloudsPeople ask me if I mind being in a wheelchair and I always say: “It was the best thing that happened to me.” The chair has given me back the freedom to enjoy life again, admittedly it was hard, going to work the first time in a wheelchair, but I just got a ‘Harley Davidson’ motorbike sticker for the back and laughed a lot with my colleagues who soon forgot about it.

The next best thing was that I got to learn how to fly an aeroplane! I won a disabled flying scholarship in 2006, and went to air-school in South Africa for six weeks – it was absolutely brilliant.

When I stopped work I found it was very difficult to have the motivation to go out, even getting dressed was too much trouble some days, so much so that I could spend a week without going outside the house. Eventually I decided that I wanted to get a dog. Having a dog meant I would have to get up and dressed and I would have to go out every day.

Rescuing Alfie so he could rescue me back

So we went to the local animal shelter to look. We had heard that Greyhounds were quite placid and there were plenty that needed a home, however we found out that they would chase our cat, so we eventually found this little 13-week-old Lhasa Apso puppy that had been abandoned outside the gates in the middle of the night. We had experience of the breed, and knew how strong willed they were, but I thought it would give me the motivation I needed to start living again.

Alfie - Support Dogs
13-week-old Alfie

He made an immediate impact – just going out and getting fresh air every day made a huge difference to my well-being, and going out with a puppy meant that I began talking to lots of people and making new friends. Alfie was traumatised by is bad start in life, so it was a real challenge to train him and make him trust me. He hated being left alone and I very soon found that training a dog when you are sitting down is not easy. Eventually I discovered the charity, Support Dogs, and they helped us both.

I knew he was smart a few weeks after we got him. He learned very quickly and was able to find the one place that I couldn’t get to him, under the table. He is totally motivated by treats and would do anything to get a reward. I wasn’t really looking for an assistance dog, but rather someone to help me train him, however when I found out about Support Dogs, I thought it was a wonderful idea.

They specialise in training dogs owned by people with disabilities and they took Alfie to a doggy boarding school for four weeks when he was two years old. We had to practice for a nearly year before we graduated, but we got there eventually.

The confidence to go anywhere: Emotional as well as practical support

Alfie changed my life – I know it sounds corny but he really made a huge difference. My condition slowly affects your co-ordination, mobility, speech, eyesight, swallowing and muscle tone.

Alfie gave me my independence back. Because of my condition, my husband was always worried about leaving me at home on my own in case I fell. Alfie was trained to bring me the telephone so I could call for help if needed. It also meant I could be alone in the house and feel safe.

When I gave up work, I lost all my confidence but then I could go anywhere with him, people didn’t see my wheelchair anymore, they just saw the dog. He was so much more that the tasks he did – he gave me the confidence to go anywhere. He was an emotional support.

People were always interested in what he does for me and how he was trained. I couldn’t go out without someone stopping me to ask about him. He would pick things up that I dropped, push open the doors, brings me the telephone and the remote, and bark on command to get attention. Additionally, Support Dogs trained him to come back to me in the park, (I never let him off the lead because I was worried he wouldn’t come back) and ‘do his business’ on command which meant we could go to the park first thing and then not worry about accidents for the rest of the day.

“If I can fly a plane I should be able to train a dog…”

Alfie - Support DogsWhen I applied for Alfie to be trained as a Support Dog, I naively said: “If I can fly a plane I should be able to train a dog…” I soon found out that aeroplanes do exactly what you tell them to, dogs have a mind of their own!

But seriously, Alfie changed my life – as well as all the jobs he did for me, like picking things up and bringing me the phone, he gave me the confidence to go into strange places and try new things. I met loads of new people and made lots of new friends. The conversations would always start with: “What a cute dog!” and “What does he do?”

Retirement for Alfie, but a new helper in Fudge

Alfie is nine and a half now and sadly his eyesight has failed and he is blind. It was heart-breaking but we had to make the decision to retire him in February. It was the hardest thing to do – we both had to learn to be separated from each other. I had to learn how to handle being invisible – people are always reluctant to talk to me when I am out on my own. I found it very restricting and I didn’t like to go out on my own.

The good news is that the charity has found me a likely replacement. Fudge is a Bug, a cross between a pug and Border Terrier he too is a rescue dog. We hope he will be ready in November. I’m really excited to start working with a new dog, and be more independent again.

Alfie will always have a special place in my heart. Of course he will stay with me -he becomes senior assistance dog (retired) and gets to sleep as much as he likes. The ‘newbie’ – Fudge – will be good for both of us. Alfie has already met Fudge and they instantly became friends. We have decided to put a little bell on Fudge so that Alfie will know where he is!

An answer to “why me?”

Because I could no longer teach, I needed to find something useful to do. I don’t like the metaphor of life being a ‘journey’ over which there is no control. I really enjoy retirement and I keep myself very busy, combining my love of teaching with my lived experience of disability.

Ten years on and now I have an answer to “why me?” My role now is to show people that you can have a disability and still enjoy life and that disabled people have a brain! I am an outspoken champion of disabled access issues.

A few years ago I made a fuss in the newspaper about the new model of bus that had been introduced in my local area. They were supposed to be wheelchair friendly – but I couldn’t get on! And the new mobility shop in town has a step to get inside! I have made new friends who have to struggle with their own disabilities. It’s true you can always find someone who is worse off than yourself, and I try to help out as much as I can.

Enabling other people to live life to the best of their abilities

I am passionate about enabling people to live life to the best of their abilities. I am a trained lifestyle coach for Macmillan Cancer Support, tutoring at Hinchingbrooke Hospital on their HOPE course (Help to Overcome Problems Effectively) – helping people living with cancer find a more positive approach to life.

My work for the Cambridgeshire Alliance for Independent Living brings me to our office two or three days a week. Presently, I am working on the re-branding project, making sure that our new publicity materials are changed to our new logos and house colours. I am determined to make our website reach the ‘gold standard’ of accessibility. We are a pan-disability organisation and should have a website that is accessible to everyone. It’s a tall order, and may take a while, but I am determined to achieve it.

Alfie - Support DogsIn my spare time I work for the Huntingdon and District branch of the MS Society as their lead support volunteer, answering their advice line and helping with welfare claims. Multiple sclerosis has very similar symptoms to cerebellar ataxia and I find that I can understand the problems our members face.

In all these activities I am supported by my husband who has become an excellent cook and until recently, Alfie the dog. Anyone attending meetings with me would usually find him doing his bit, actively sleeping under the table. (That’s the dog, not the husband..!)

Discovering the Social Model of Disability

Supporters of the Social Model of Disability believe that it is our surroundings and the way we are treated that ‘disable’ us rather than the conditions of our body. I struggle with the term ‘disabled’ – just because I use an electric wheelchair, doesn’t mean I am any less of value than anyone else. I’m still the same optimistic person who likes a challenge and enjoys helping people reach their full potential.

When I first learned about the Social Model of Disability, it made me very angry. Why hadn’t someone told me about this before? It changed my whole outlook on life, and definitely changed the way I expected to be treated.

The list of everyday things that ‘disable’ me are endless, for example: I have to call up 24 hours in advance if I want to use our local buses and my local train station has no lifts to the platforms. I can’t use the London Underground and taxis are a nightmare. I can’t get into most pubs, hotels, shops and restaurants where I live and I can’t visit people in their homes or go to parties and why can’t they put mirrors in accessible toilets?

For so long after I had to retire from work I felt helpless, vulnerable -and yes, disabled – but not now. It took me a good few years to get my confidence back.

A person first

Eventually I was looking around for something to do when I found Disability Information Service Huntingdon (DISH) – an information help line for people with disabilities. (Notice I am a ‘people first’ person. I hate the term ‘disabled people’ or even worse ‘handicapped people’. I am the same person I always was, I just use different form of transport to get about.)

My work at DISH allowed me to use all my hard learned experiences to help others who were going through the same things. They made me feel valued again and introduced me to my role at the Cambridgeshire Alliance for Independent Living – formerly the Cambridgeshire User Led Organisation (ULO), who wanted to give a voice to people with disabilities, their families and their carers.

Leading ability and researching the Social Model

Not long after I joined the Alliance’s board of trustees they sent me on a course ‘leading ability’ run by the Essex Coalition of Disabled People, and that’s where I learned about the Social Model. The frustrations around where I could go and what I could do fell away and I turned all those negatives into positives.

As Chair of Disability Cambridgeshire and trustee for the Cambridge Alliance for Independent Living, my role involves bidding for funding for new projects, all focused on giving people with disabilities a voice.

The Alliance’s latest project is called The Model Conversation and is funded by the Heritage Lottery. We are recording interviews with local people to see if the Social Model has affected their lives too. The interviews will be recorded and made into a documentary to be used as an educational resource so that more people learn how valuable and able we all can be.






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