Stories from our community

Learn more by reading the personal story of a staff member below and by watching an interview with one of Warwick’s Human Library booksLink opens in a new window talking about their experience of physical disability, the prejudices they have faced and how they defy stereotypes.

When thinking about somebody with a disability, the most common thing thought about is a wheelchair user. The International Symbol of Access is a wheelchair, and this is incorporated onto accessible toilets, parking signs and other disability-related items. This can skew people’s perception of disability and often leads to people who are not wheelchair users facing unnecessary and distressing confrontation from members of the public when using facilities designed for disabled people, including toilets and parking. This type of disability discrimination and ableism based on assumptions is more widely known, but I wanted to use this guest blog as an opportunity to talk about people with variable physical conditions/disabilities that cause a variation in what type of mobility aid they use, depending on how their condition is presenting that day. I want to explore some of the reasons why this may be the case, how it feels as an individual to experience this, as well as the experience of how people’s perceptions of you change based on how you are presenting that day. I will also touch on some of the ableism that can come from within the disability community itself and how you can help to support disabled colleagues and students with variable conditions/disabilities.

To keep this blog anonymous, I will make generalisations about my conditions, but I have a pair of conditions that affect my joints and heart so walking can cause physical injury, pain and fatigue amongst other things. This means that the safest and most comfortable way of getting around is to use a powered wheelchair as the stress on my joints and heart are significantly reduced, reducing my pain levels and fatigue and increasing my ability to function. However, the downside of using a wheelchair for my condition is that my muscles decondition so when I do stand, the stress on my joints (and my heart) is greater, increasing the risk of injury. When I first got my wheelchair several years ago, shortly after diagnosis when I was physically too unwell to walk, I was not aware of the downward spiral that would follow. It’s a typical catch-22 situation that I needed the wheelchair to get around because my condition was too unstable, but my condition was getting more unstable because of using the wheelchair. Can’t win! Lockdown has been great for managing my conditions though because I have been able to reclaim a lot of my previous activity levels and change my work set up to one that is better suited to manage the variations in my conditions.

Something else that perpetuates the problem is society’s assumption that all wheelchair users can’t walk or are paralysed. Of course there are some who can’t because of their own situation, but this view of disability binarism, (the black-and-white view of you either can or can’t walk) means that many wheelchair users who can walk when their condition permits, often for short distances in managed scenarios, feel unable to due to comments made by others and the anxiety this induces. Out of the 1.2 million wheelchair users in the U.K. approximately one third of them are ambulatory users. In recent times, media perception of benefits cheats and so-called “fakers” has fed the perception that it is right to call people out who “don’t look disabled” or if they cross their legs or stand up from a wheelchair because they clearly must be faking… Obviously this is not the case, but has caused many people to unnecessarily lose access to financial assistance, vital mobility aids and Motability vehicles. With the typical time it takes for an appeal to be successful being far longer than the grace period to keep cars and mobility aids, disabled people are losing their independence due to negative assumptions perpetuated by the media. This is a frightening prospect for many disabled people, particularly those with variable conditions, that the actions of someone else could have such a negative impact on your life.

Let me tell you how this translates into my real world with a typical example of what should be a simple trip to the supermarket. I drive into an accessible parking space in the supermarket carpark. The adaptations made to my car to help me to drive are not clearly visible from the outside but are significant. I put my blue badge on the dashboard looking around to see who is watching despite having nothing to hide. The older couple in the car next to me shake their head at me because I am clearly too young to have a blue badge in their eyes. I get out of the car, stretch and stand for a moment to check my heart rate whilst holding onto the door. In these few seconds, you could say that I look perfectly “normal” but my mind is whirring with anxiety of who is watching and are they trying to snap a picture ready to confront me or report me. The couple shout from the window “Who’s badge have you stolen?”. Without replying, I get my stick out of the car and then head to the boot to get my powered wheelchair out. They soon drive off, but without apologising.

Inside the shop, there is something that I need on the top shelf. I am tall enough to reach it, but not tall enough from my chair. Now comes the internal dilemma of “I am well enough to stand to reach it today but will that cause more unhelpful comments from people?” (my least favourite – “it’s a miracle!”) but I don’t want to have to ask for help again when I don’t actually need it today. I wait until the aisle is clear, check my heart rate and go to reach it, but just as I’m sitting down, someone appears behind me and says “caught ya!”. They try to make it into a joke by following up their statement with questions like whether I need a license and how fast can I go, which is the thousandth time that I’ve been asked these questions. I make polite but awkward conversation before carrying on with my shopping. At the checkout, the new dividers between tills mean that I can only fit down one of them in my powerchair and that one is not open. I am frustrated with myself because although I have the ability on good days to collect something from a shelf, I can’t walk around the whole shop or stand in a queue without ending up in a heap on the floor. It’s like giving a kid a lollipop to hold but not allowing them to taste it.

Sadly, people also treat me differently whether I am sat in a wheelchair or stood. When sat in my wheelchair, people often talk over me or treat me as if I am not intelligent. They talk to my friends about me over my head – “Do they need help?”. Sometimes I use my wheelchair to get from A to B to save my energy for when I get there and to be able to enjoy myself in less pain. This significantly improves my quality of life. I also have a choice of mobility aids that I can use for different things based on how my condition is at that moment and what I am planning to do. People don’t realise that cars can be mobility aids for many people and proximity of parking to buildings can be important.

People also assume that because I’ve done something one day, it means that I can do it all the time. This is particularly hard for family members to understand and can cause frustration when I can’t do it there and then. Often the cause for not being able to do something is because I did it the day before. Another source of ableism for people with variable conditions comes directly from within the disability community itself, particularly those who have conditions that do not change. This can lead to feelings of not being welcome in the community because “you’re not disabled enough”, but let’s face it, this is not disability top trumps! Sadly this often makes me feel that I have to keep this part of my disability secret from others in the disability community.

So if you’ve made it this far, hopefully you are wondering what you could do to help disabled people, particularly those with variable conditions, to feel supported. Here are 3 things to consider:

1. Actively listen to the disabled person. They are the only person who knows what is going on with their body at the time. If they say they can do something, that is equally as important as them saying that they can’t do something. Respect them if that changes.
2. Never assume. You can never tell from someone’s appearance exactly what is going on or whether they may have a hidden disability. Just because someone is smiling doesn’t mean they’re not in pain or struggling more than you will know. Appearances can be deceiving.
3. Challenge negative behaviours. In an office setting this could present as so-called banter, but phrases including the words “miracle” and “faker” are never okay when aimed at a disabled person. In public, if you see someone being confronted, or you hear an associate talking negatively about a disabled person, feel empowered to challenge negative behaviour and stereotypes.

Anonymous staff member