What I Wish People Who Call Me Inspirational Could See

Following the death of Stephen Hawking, a few discussions have opened up among disabled people about how we are viewed with regard to “being inspirational.” BuDS (Buckinghamshire Disability Service) recently asked the question: Are you tired of being labeled inspirational, or tired of people assuming you need to be inspired?

I find the latter quite annoying. I’ve had people asking me to do regular volunteer work – even though I am signed off work because I am too unwell – with the follow-up that it will give me something to do. Really? I’m a writer; I write blogs and articles about my health conditions, I am working on a few novel ideas, some poetry collections and a whole bunch of other things. I run a local support group for people with fibromyalgia. I run a Facebook writing group that has over 30,000 members and I am very hands-on, helping people wherever I can. The project list goes on, but all the things I do have one thing in common; they can be picked up or dropped as needed.

Sometimes I am unable to do anything for weeks or even months at a time; I’m not doing nothing, I am resting because I physically and mentally cannot do any more. Other times I am finding the odd few minutes where I can do something. Occasionally, I have a day or two where I can focus and get a lot done. I am never doing nothing; if I’m well enough to do things then I have a list of things I can pick up. When I am not well enough to do things, I am still fighting my illness.

For me, the more interesting part of the question relates to the people who call me inspirational. They tell me that I am inspirational because I have had so many challenges in my life, but I keep going. They tell me I’m an inspiration because I write blogs about my health problems to give people hope; they don’t see the bad days when I am screaming and crying because I’ve had enough and this illness just isn’t fair.

Yet – at the risk of sounding big-headed – I do believe I am inspirational. I didn’t have a choice about being disabled; if I could choose, I wouldn’t have any of these illnesses. However, I do have a choice about how I face life, what attitude I try to adopt. I have chosen to hold on to hope and make the best I can of this life.

I’m not tired of being labeled as inspirational, but rather seeing time and time again how people knock themselves down as they label me. Do they really not see that they are inspirational too?

All of us have difficulties in this life; when I am in my wheelchair, it’s pretty obvious what some of mine are. I have had women comment on how inspirational I am and knock themselves as nothing special, because they got married young and are still happily married 25 years later with three beautiful children they had no problems trying for. Is that not in itself inspirational? A good mother and wife, who works well with her partner to keep their marriage going? Am I supposed to think they never had hard times in their lives? Is it not an inspiration that they kept going?

I don’t think being disabled makes me particularly more inspirational than anyone else. At the end of the day, if we really look, we can see that inspiration in everyone:

The person who never gave up.

The person who is breaking now because they kept themselves strong for so long.

The person who can smile when they are having a bad day.

The person who works hard with their partner to keep their marriage going.

The person who loves their children unconditionally.

Are we not all inspirational?

There seems to be an attitude that disabled people are inspirational, but the truth is, we are neither more or less inspirational than anybody else – we just have some troubles non-disabled people don’t face.

To me, watching someone I love being sick and in pain is much worse than being sick and in pain myself. It’s so much harder to stand by someone you love, to see their pain when there is nothing you can do to help them, but to keep on loving them and caring for them. Every single one of my friends is an inspiration to me, simply because they are still standing by my side.