Image description: Photo of me, a white women, with short blonde hair. Wearing black velcro orthotic boots; a green dress with black tights that have different coloured spots on. sitting in my electric wheelchair.
Acknowledgment – This blog post is a personal opinion piece, based on thoughts and ideas about my own lived experience of disability. I acknowledge these will not be shared by all in the community, and respect their rights to have, different even conflicting ideas. This website has an accessible feature, that allows different accessible formats by simply clicking on a button labelled ‘Accessibility Menu’ that appears in green on all pages. It will provide you with a number of options to change the appearance to meet your accessibility needs. This communication has been written by a dyslexic person. If you have any trouble with the meaning of any of the sentences or words, please do not be afraid to ask for clarification. I’m #MadeByDyslexia – expect creative thinking & creative spelling.
Today 1st March 2023 is international wheelchair day, first celebrated in 2008 – you can find out more about its launch here https://internationalwheelchairday.wordpress.com/2008/03/
I’m choosing today to publish this blog exploring my thoughts about being a wheelchair users.
I have now been back at work for almost five months, just this time I am using an electric wheelchair most of the time. So I now call myself a wheelchair user, but I struggle with this for many reasons.
- I can walk all be it short distances.
- I feel judged by those that know I can walk and wonder what they think of me.
- I’m very privileged to be able to afford a wheelchair that meets my needs allowing me to do the occupations I need, want and are required to do, (the wheelchair I have from wheelchairs services does not meet these needs.)
- I feel guilty about this.
- I question if I have become to rely on the chair too much and should push myself more.
- I feel the need to justify why I use the chair to myself, and to everyone every day, this never goes away.
- I worry that health professionals involved in my care judge me and think I should walk more – to improve my strength, help with managing weight, and a healthy lifestyle.
- Some people make assumptions of your abilities, and I wish at times the chair or sticks I’m walking with were invisible so people saw just me.
- The chair is a shield I can use to prevent people from seeing me, because that safer.
- That I’m seen as someone who just thinks about my own needs.
How do I manage these thoughts?
I think a lot – and try and share those thoughts appropriately, I’m aware that a lot of my thoughts are my internal-ablism, and that some of the ways other people react to those using wheelchairs are ableist. I have chosen to engage and have became embedded in the wider disability community. This brings me comfort that I’m not alone in my experiences but also sadness that these thoughts and experiences are not going anywhere soon.
I use the chair as it gives me so much freedom, more freedom than I have had even before spending over a year in hospital. I have at times in my life, used a wheelchair short term; On family holidays where we would need to walk long distances. I remember a school trip to euro disney where I was very popular with the other kids as using the wheelchair meant we didn’t have to queue. However like the orthotic boots or splints I wore as a child, when I became a teenager and young adult I stopped using aids that helped, as I didn’t want to be seen as different, or challenged for not being disabled enough. This lead to years of being a pain, feeling exhausted and frustrated. I often kept my pain secret in fear of being left out by others.
Now although I still question myself everyday and have intrusive thoughts that I’m always being judged negatively for my choices. I much happier with who I am, and now I’m not in pain all the time, I’m much happier being able to enjoy a fully day out and not have to rest for two days after.
There are lots of barriers to using the chair, people often think it’s environmental barriers which often it is, but for me most of a barriers are other peoples assumptions.
That people can’t walk.
That people that can walk should not use a wheelchair.
That people need your help all the time .
That people’s communication and or ability to understand things will be affected.
That people can be talked about in their presence without including them because they don’t understand.
That people don’t work.
That people can’t work.
That people don’t want to work.
That people will expected to be treated special.
That people should be treated as special.
That people don’t have relationships, and families.
That people are inspirational.
That people rely on benefits or are lucky to get benefits.
That people claim benefits falsely.
That it’s ok to tell people how inspirational you find them.
That it’s ok to ask how people have sex.
That it’s ok to ask what’s ‘wrong’ with people.
That its ok to comment on how things should be different so that people ‘like you’ can do things,
That it’s ok not to take action on these comments and be an ally.
On international wheelchair day – I just want you to reflect
Have I ever made any of the above assumptions?
Why have I made them?
What do I need to learn to ensure I better understand the barriers that people who use wheelchairs face?
How will I learn this without putting more work on those that use wheelchairs?
Once I have taken the time to learn, what am I going to change?