`The services for people with disabilities in this country are incredibly inadequate. I'm a taxpayer and I have to pay for the privilege of coming to work every day. Each week, it costs me £85 for taxis to and from work. I don't get a penny of that reimbursed from anywhere. Because I'm working, I don't qualify for a medical card and I am therefore entitled to nothing - other than some reimbursement for medication through long-term illness benefit - and I think that's terribly wrong.
For people with a disability to stay at work, they need transportation. In 1997, there was a nine-month pilot scheme whereby you got three-quarters of your taxi fare back from the EU via the National Rehabilitation Board. Then the pilot programme stopped and since then nothing has happened. I use a wheelchair and accessibility is also a problem: on Earlsfort Terrace, where I work, the footpaths are very high and it's impossible to cross the road. I have to stop passers-by for help and I shouldn't have to do that. The footpaths should be wheelchair-friendly. The Conrad Hotel is great because it has a wheelchair ramp at the entrance and a lovely disabled toilet, but many other hotels, pubs and restaurants are impossible for me to get into. I have the money to pay for a meal and a bottle of wine and I should be allowed to enjoy that. It's a civil right.
Disabled toilets are few and far between. Last week, I was in a pub with a friend and I couldn't get my wheelchair through the narrow toilet door. If I go to a concert in the National Concert Hall, I have to sit at the very back because that is the only place a wheelchair can gain access, no matter how much I'm willing to pay for a ticket. Sometimes I feel like screaming and telling everyone: `Why don't you get your act together?' Another problem is that it has been impossible to find out what your entitlements are to anything in this country, and I'm glad that the new MS clinic at Beaumont will be tackling this. I find it very frustrating, I really do, that despite putting huge effort into working and being a taxpayer, I get no financial help. I think that society has difficulty understanding that you can have a disability, but still be able enough to work and participate. When I began using the wheelchair four years ago, the first impression I got from people was that they were thinking `her legs don't work, therefore her brain doesn't work'. At Beaumont, the physiotherapists and the doctors have been very supportive in helping me to remain active and in the workplace, and without the Beta-interferon, with which I inject myself three times a week, I probably would not be able to work at all. If I am having trouble coping with the injection, all I need to do is ring up the clinic and have a talk with the nurse who is always encouraging. I was 25 years old when I was diagnosed with multiple sclerosis. It began when I had a bad fall down the stairs and hit the base of my spine on each step as I fell, then landed on a marble floor. The doctor told me I had bruised my back and I went back to work, even though I was in pain. Over the next few weeks, I gradually became completely numb from the waist down, although I could still walk. One specialist told me that my problem was that I was flat-footed. Eventually I was sent to a neurologist and diagnosed with MS.
This was July 1979, and my sister was getting married in September and I was to be her bridesmaid. I asked her if she was sure that was what she wanted, now that I had MS, and she said I was to be her bridesmaid and that was that. I think that's what kept me going. After that, I never stopped. Over the years, I've been partially blind, totally blind, I've had epilepsy (which is a rare complication of MS), I've had stomach problems and I've been hospitalised for months at a time. But I have to be really sick, or hospitalised, to take a day off. I have had to give up some of the things I loved, such as playing squash and dancing, because the strain could trigger an attack. It's very important for me to keep myself from falling, so while I can walk a few steps, I must always make sure that there is a chair nearby. My parents, with whom I live, are elderly so that if I go down, they're not able to get me up. Sometimes, it's hard not to be very bitter. Sometimes, especially on days when I give myself the injection, I am so debilitated you wouldn't believe it, but I still come to work. I enjoy getting out of the house and meeting people. So I keep repeating to myself, `today is going to be a good day', over and over. I'll keep going as long as I can. They won't ever be able to tell me that `you don't try', because I do try."
In conversation with Kathryn Holmquist
People affected by chronic neurological diseases such as MS can improve their function, and by ex]tension their quality of life, by obtaining information about their condition, their entitlements and by accessing rehabilitation services. Beaumont Hospital has been providing a multi-disciplinary rehabilitation service to people with motor neurone disease since 1993 and on Wednesday it will launch its first MS clinic in tandem with the Multiple Sclerosis Society (01-2694599) and with generous funding from the pharmaceutical industry.