‘No offence, but if I was in a wheelchair I don’t think I’d get up in the morning’
Remarks like these reveal so much about non-disabled people’s perceptions
I remember getting a phone call asking if I’d be interested in writing a column about living with a disability for The Irish Times. I like writing, so I was definitely interested. But, writing about living with a disability. Writing about life as a disabled person.
It made me stop and think.
Despite my very obvious physical difficulties, when I thought about it, I realised I rarely actually thought of myself as “a disabled person”. I rarely spoke about my disability. In fact, I was busy trying to focus on everything but my disability. But I said yes and this time last year I sat down to write my first article.
The headline was Weren’t they very good to give you the job with the wheelchair. Over the past year, a lot of people have asked me about that statement. Did someone really say that to you? There have been numerous expressions of surprise and disbelief.
The following comments that have been directed at me might surprise you too:
- Weren’t they very good to give you a job with the wheelchair.
- But how did you become a solicitor with the wheelchair?
- Do you know x from the service?
- Is that your carer with you?
- Be positive. I know you’ll walk again.
- What do you do all day?
- But you don’t look sick.
- You’re too young to be in a wheelchair.
- Do you know x? She’s in a wheelchair too.
- Have you heard about stem cell research?
- But you seem very happy.
- If you really put your mind to it, maybe you’ll walk again.
- You look so normal.
- No offence, but if I was in a wheelchair I don’t think I could get up in the morning.
These are the type of comments and questions you tend to brush off. Politely. But they tell their own story. They make us stop and think. About the difference between the perceptions of non-disabled people and the reality of disabled people’s experiences.
Sometimes I too stop and think about the practical reality of living with a disability.
I’m sitting in the conservatory writing this article after work.
- Someone has taken off my shoes and plugged in my laptop for me. I’m here because someone got me out of bed this morning.
- Someone put my clothes on.
- Someone drove me to work.
- Someone opened the door to let me into my office.
- Someone got me a glass of water in the afternoon.
- Someone grabbed my printing from the photocopier when I was in a rush.
My sister is in the room next door. When I’m finished I’ll call her and she’ll unplug the laptop and make us dinner. Later someone will do my physiotherapy stretches. Someone will put me to bed tonight. They will plug in my electric bed and mattress and will charge my wheelchair for tomorrow. Someone will give me my medication. If I wake and need to move during the night, I will call someone.
The “someone” is my parents, my sisters, my personal assistants (PAs), my colleagues, my friends, my assistance dog. Not everyone has someone. There are young people with my level of disability living in nursing homes. There are young people that receive 42 minutes a day of home help or personal assistance.
We need to stop and think about that. We need to be aware. Because often it’s that simple, people aren’t aware. Before I began using a wheelchair, I was one of these people. I was listening to Ray D’Arcy on the radio a few days ago. He was interviewing the presenter and two participants in a new RTÉ series The Fitting Room. D’Arcy said that he never thought about the practical difficulties disabled people face when shopping for clothes. Once he became aware, it made perfect sense to him. The Fitting Room will have the same effect in a wider sense. There needs to be greater visibility of disabled people in the media in order for wider society to understand the inequalities that exist.
That’s why I wanted to be part of this series. Awareness is the first step of change.
Sometimes finding solutions to inequalities requires large-scale change – government policy and legislation. But sometimes solutions lie in the smaller things. In the everyday things.
I wrote an article about employment inequality. Afterwards, a business owner contacted me to say he had never hired a disabled person. He said he had never thought about it, but he was going to change that.
When I wrote about the practical reality of living with a physical disability and the equipment, planning and routine involved in getting to work, a colleague said she had never thought about it. But she now thought about it when she hopped into the shower, last minute on a busy morning, or when she hopped into the car to drive to work.
hen I wrote about lack of access to PA hours, a university student contacted me to say she was going to change her thesis topic so as to research the area. When I wrote about 42 minutes a day being the average allocation for personal assistance services, people spoke to me about what they could realistically achieve in 42 minutes if they were reliant on someone else.
The articles made people stop and think.
People have contacted me to ask me about making buildings accessible and facilities more inclusive. Small things can make a big difference.
Sometimes I stop and think about the statements I have set out above. How did you become a solicitor with the wheelchair? The answer is with a lot of help and a lot of support from family and friends and from all the people I met along the way. PAs, doctors, medical professionals, teachers, classmates. So, I am a solicitor. I am a daughter, a sister, a friend, a colleague. I also happen to have muscular dystrophy. I haven’t written that before because I didn’t and don’t want to be defined by my disability. I want to focus on what I can do. I want to focus on ability.
Being part of this series has been an incredibly positive experience for me. It has reinforced the sense of support and understanding from those around me. It has highlighted the importance of raising awareness. It has shown me that real change can and does come from sharing experiences. This series has provided us with the stories of seven disabled people. Seven unique perspectives. Honest, open, thought-provoking and often challenging. Stories of ability. Stories that made all of us stop and think at times.
Platform Series: Aisling Glynn
1) Weren’t they good to give you a job
2) 847 in Dublin, zero in west Clare
3) It’s impossible to forget
4) I’m disabled . . . by society
5) Wheelchair versus plane
6) The number 42
7) What makes us disabled
8) Life’s challenges
9) I don’t think I’d get up in the morning