How One Word Can Change A Perspective
Posted by Ami Hook-Ireland on February 7, 2022
Terminology within the disabled community is talked about on a daily basis, as disabled people have become more and more comfortable in expressing how they feel towards certain words and phrases that are used to describe themselves, or their disability. Long gone are the days when people would only refer to someone as – suffering with, or from – a particular disability.
For example, I have Ataxia (more specifically, Sensory Ataxia, among other conditions), and people would often say that I suffer with, or from, it. But to me, I don’t see myself as suffering with it. I have Ataxia. I manage my Ataxia. Do you notice the difference? By saying that I have Ataxia, it doesn’t make it sound like I’m trapped by it, or that it’s ruined my life.
There are many factors that contribute towards changing the terms that both disabled and non-disabled people use. It could be by using mobility aids, or living in an accessible home, having an adapted car, and many more.
Disabled people, myself included, want to remain as independent as possible and, by using our preferred term, or phrase, to describe ourselves, this really can make us feel independent, that our opinions are valued, and we are treated fairly and included.
How One Word Can Change Your Perspective
I hold my hands up and admit that I used to refer to disabled people that use wheelchairs as – wheelchair-bound. This was mainly due to using the term to describe myself, and at the time, I wasn’t aware of the disabled community on social media, and I didn’t know any of the terms and phrases that people preferred.
However, as much as I was quickly becoming more familiar with this new terminology, I still saw myself as wheelchair-bound. That is, until I received my new wheelchair.
Back in 2018, I was admitted to hospital due to being unconscious. I had an infection and was placed in an induced coma for four days to give my body a chance to recover. I had contracted bilateral pneumonia and almost died. To cut a very long, 9-month hospital and rehabilitation stay short, I was in Intensive Care for a month, and during that time, I came to realise that I had lost the ability to do almost everything.
I couldn’t sit up, stand, or walk independently. I couldn’t eat, or drink, or clean myself. I lost all dignity, and I was severely depressed.
While I was recovering in hospital and learning how to sit up again, I started to sit in a wheelchair. But that’s all I could do. I didn’t have the strength, nor the co-ordination, to be able to propel myself, I was quite literally bound to my wheelchair. Either someone had to push the chair, or I had to ring for the nurses to get something for me.
The wheelchair I had at that time was a heavy manual one. The wheels were far too thick for me, especially having muscle weakness. All I wanted to do was to go and explore, although a hospital isn’t the most adventurous place to be exploring! But I couldn’t do anything at all, and I was convinced it was going to be like this for the rest of my life.
It wasn’t until I became an in-patient at a specialist neurological rehabilitation centre and started seeing an Occupational Therapist regularly, that I found out there are different types of wheelchairs, and that it was possible to find one that suited my needs.
I’d only ever seen standard wheelchairs and didn’t know they could have different features. I didn’t realise how independent they could make a disabled person feel.
Several weeks after my wheelchair assessment, I received my new wheelchair. I remember the day it was brought into my room, and I watched the man set it up. As soon as I sat in it, I could feel the support it was giving me. The back support was incredible, and the footplates were adjusted to support my feet, instead of having them dangling all of the time.
But absolutely nothing prepared me for the amount of joy I felt when I tried to propel myself forward.
I gasped with excitement. The wheelchair was so lightweight, really easy to manoeuvre, and I couldn’t quite believe how much of a difference this made within five minutes. For the first time in months, I could see myself being happy and enjoying life.
For the first time, I no longer felt trapped, or restricted, by my wheelchair, I felt independent. I now saw myself as a wheelchair user.
Life Since 2018
After being discharged from the rehabilitation centre in November 2018, I wanted to focus on adjusting to being at home again after being in hospital for so long. When 2019 arrived, I was hopeful and excited for the year ahead. My friend asked me to take part in a fundraising event (Superhero Tri) with her and it was an incredible and momentous day for the both of us, for different reasons.
I managed to wheel myself for a few minutes at the start and a couple more times throughout the 10km. To some people, this may not seem a lot, but I wouldn’t have been able to have done any of it without my new wheelchair. My wheelchair did not bind me.
In September, my husband and I got married. I was able to navigate our reception with ease. I was able to go to each table and chat with our guests. Nobody pushed my wheelchair at our reception, I did it all myself. My wheelchair enabled me to do that.
Before the pandemic hit in 2020, I remember going to one of Asda’s superstores after a physio session and I was determined to wheel myself throughout the entire store. Partly also due to me wanting to be able to stop and look at items, rather than the person pushing me past whatever it was I wanted to look at, then having to reverse.
That was the highlight of my day, not having to shout, “Hold up! Reverse!”
In all seriousness, I did do the entire route of the store. It took me over an hour, but I can say, “I did that all by myself”. My wheelchair is a part of me, it enables me to do things I thought I never would be able to do again. The right wheelchair does not bind a person. It enables them. It empowers them. It makes them feel independent.
Before You Say Wheelchair Bound
Do you remember the saying, “Sticks and stones may break my bones, but words will never hurt me”?
Disabled people face prejudice and ableism a lot, if not every day. We know how society often perceives us; we’re used to being stared at. All disabled people want is to be treated fairly and not to be excluded. Instead of looking at us and making an assumption, talk to us. Ask us how our day is and get to know us. The only difference between you and I is that I use a mobility aid.
I’m not an object, I’m a person like you, and I’m a wheelchair user.
Ami Hook-Ireland (Ami Ireland on social media) is a disability blogger, living in Norfolk with her husband and daughter. Ami began blogging towards the end of 2018, wanting to document her ongoing recovery and her experiences of staying in hospital and a specialist neurological rehabilitation centre for 9 months.
Ami blogs about disability, Marvel, parenting, and anything that takes her fancy. She is a huge fan of Marvel films, and will often be fan-girling over Tom Hiddleston who plays the God of Mischief, Loki. You can find Ami on her blog, Undercover Superhero and Twitter.