Invisible illness and tackling ableism.

I hate that glare people give and the mutters they share with each other when I get on a bus and sit in the reduced mobility seat. Because if I fall trying to get along the bus or to the upstairs I’ll be less able to catch myself and the risk of serious injury is much higher due to my number of surgeries. Just because I am young does not mean I can’t have a disability. Just because I look well doesn’t mean I am. There is so much ignorance about invisible disabilities.

There are an estimated 14.1 million individuals in the U.K. living with a disability and it is thought 70% of those could be invisible or hidden disabilities. That’s 9.87 million people. More than the entire population of London. So why do we still have such a simplistic view of disability then? People picture disabled people in a wheelchair or with a walking stick. And even with those people have a very specific view of who uses them. Elderly people in the case of a walking stick and a paralysed person in the case of a wheelchair. Out of the 1.2 million wheelchair users in the U.K. approximately one third of them are ambulatory users. They are still disabled and still need to use a wheelchair but can walk in some circumstances. If you see a person standing up from a wheelchair it categorically does not mean they are ‘faking’ their illness or just being ‘lazy’.

One big thing I have learnt since becoming disabled myself if that many peoples conditions are not static. They can have good and bad days. For example I have a walking stick and walking poles but I won’t always use them. But If I am having a bad pain day, or perhaps I just had a hard physio session or I know they’ll be a lot of standing (that causes my leg to stiffen up and my knee to jam which is seriously painful) then I will use a mobility aid. I have a little fold up walking stick and I find amazing how peoples attitudes change when I get it out. They stop glaring at me for walking slowly, or sitting on the seats for those with limited mobility or using the lift. Suddenly everything makes sense in peoples minds. But you can never ever judge someone on their appearances. Just because I go horse riding or walking or volunteering does not make my disability less real. Disabled people should not have to remain seated at home in order to prove themselves (and often when individuals do that they are then called lazy!).

When you see someone using disabled facilities your first thought should be to respect them and believe them. It is not your job to police disabled spaces. You cannot possibly know someone’s health issues just by looking at them. Take me. If I don’t have my walking stick or sunflower lanyard I look ‘healthy’ (whatever that even means). Yes I am wearing glasses so that shows something but not much. What you can’t know is that I have had 4 knee surgeries since October 2018 and that the most recent one was only 3 months ago. You can’t see that I have a partial knee replacement. You can’t feel the immense pain in my hip or be aware that I am waiting for an MRI on it. You don’t have the information that I am on the waiting list to see a neurologist for potential brain damage from my accident. You don’t have my medical history and that I fractured my ankle earlier in the year. I could go on but I think I have made my point pretty well.

However there are a couple of things I think you are able to do that are acceptable. Disabled parking is only for people with a blue parking badge. It is not for all disabled people, a sunflower lanyard does not allow people to park there. If you cannot see a disabled badge on display you can ask a car to move. However if they have a blue badge they have a right to park and it is not your job to judge whether they truly deserve that badge. The second acceptable thing is that if you really need one of the limited mobility seats and they are all full you can politely ask if someone can move. Now it might be none of them are able to because they also all really need the seats but you never know and there is nothing wrong with asking so long as you are polite.

On a similar theme 1 in 4 people in the U.K. will experience a mental health issue at some point in their lives. No one can see mental illness. Sometimes you may see changes in behaviours and appearance but that is not a certainty and even with those, on their own, it is not enough for you to ‘diagnose’ someone. Diagnosing or providing treatment strategies to complete stranger disabled individuals is a surprisingly common hobby I have found. But that aside mental illness can be hidden and masked. Often, as was the case with me, the sicker people get the more they hide away. The more they desperately try to portray to the world that they are fine and everything is under control. That’s why if someone tells you they are struggling you believe them. They don’t need to evidence it, you don’t need to evidence it. They don’t need to justify why. Just believe them and listen to them. Even if you can’t practically help someone just show you are there and you care what they are saying and about them. It can make all the difference. So many of us wonder around with our emotions bottled up tight inside us with pressure building up. To be able to release that can be so beneficial.

However all that being said people have a right to privacy. Another thing I have realised since becoming disabled is how many people ask me about my medical history. I don’t mean close friends and family here but people online or acquaintances. You don’t owe anyone your medical history. There is a big difference between not being ashamed and not wanting to tell people about your medical care. You don’t have to prove your disability. That’s something I definitely struggle with. When people question why I am using disability services or why I need certain medical things or other life decisions, I feel I need to spill the whole of the difficulties of the last 3 and a bit years to show them that I am telling the truth about being disabled. But as I said above you shouldn’t need to do that. People should believe you.

Another struggle of invisible illness from the disabled persons point of you, and I hope this will be helpful for non-disabled people reading this, is asking for help. For example the other day I was in a cafe. I had just had a really long and difficult blood test appointment. I was feeling slightly funny and I only had 40 minutes until my physio appointment. It was also absolutely freezing outside. Basically I needed to sit down inside the cafe. When I came in I saw a member of staff clearing a table so I went to and politely asked if I could grab it. She told me I had to stand in the queue first and then I could get a table after I had ordered. Which don’t get me wrong I do understand. But what I wanted to reply with was what I explained above, about how my invisible illness meant I really needed that table. I opened my mouth to explain but instead I just said ‘okay really sorry I’ll go and wait in the queue’. Which I did and sure enough by the time I paid there were no tables. So I had to sit outside in the freezing air which didn’t help me feel much better and meant I was cold and stiff for physio. I allowed myself to internalise ableism and that frustrated me.

For those of you who don’t know ableism is the definition according to Oxford Languages is: Discrimination in favour of able-bodied people e.g. “We were fed up with the ableism of the women’s movement.” And according to Urban Dictionary: “Ableism is the discrimination or prejudice against people who have disabilities. Ableism can take the form of ideas and assumptions, stereotypes, attitudes and practices, physical barriers in the environment, or larger scale oppression. It is oftentimes unintentional and most people are completely unaware of the impact of their words or actions.”

I could make a whole blog post about things that are ableist. But more usefully in the interests of honestly I have to say there are things I thought (or didn’t think) before I become disabled that would fall into the ableist category. A large part of that came because I didn’t have a good understanding of invisible illness. If we are completely honest with ourselves have you ever thought a person using the disabled toilet or other facilities ‘doesn’t look disabled’ or made passing comments like ‘your disability doesn’t define you’ or ‘that lots of people on disability benefits should be at work’ or ‘that person looks too young to be using a disabled parking space.’ I am not proud of that but allowing ourselves to acknowledge what we have done wrong and learn and move forwards from it is absolutely crucial. It is never too late to change your mindset and I hope this post might help even one person think twice before judging. And to all of you with invisible or chronic illness, your feelings are valid, your deserve to be heard and you are not alone.

One thought on “Invisible illness and tackling ableism.

  1. I can totally understand you on this one. I have beeen in your place in the past and in some ways I still am. I hope your message is heard.
    Take care!

    Like

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