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To the Man Who Accused Me of Not Actually Being Disabled

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To the man who thought he knew it all,

For me, it was another day of trying to function when my body was hurting and feeling unwell. I was meeting a friend for her birthday. I’d had to walk (or should I say wheel) myself into town because there were no wheelchair accessible taxis available, and the driver of the non-accessible taxi I called instead refused to take my wheelchair in the trunk of his car.

I can walk, you see, so I can get out of my chair and fold it up to put in the car, but standing up when I am out in my wheelchair always makes me feel nervous. There is a lot of ignorance surrounding ambulatory wheelchair users, so those of us who are able to walk often face strangers, such as yourself, making comments just like the one you made when you asked me how I was going to get inside.

“So you’re not disabled, then!” you said, in an accusatory tone.

I was tired and quite frankly annoyed with you, but I tried to remain calm and responded to you, letting you know that yes, I am disabled, but just because I use a wheelchair does not mean I am unable to walk — that I need my chair for when I am doing longer distances. Straight away, I was faced with your frosty and unkind voice telling me I’m obviously not disabled. I asked you not to talk to me because I could not deal with your arrogant attitude and opinions based purely on ignorance. I wasn’t looking for confrontation; I was only here to enjoy a night out with some of my friends. I was only waiting for one of my friends to come out and help me lift my wheelchair up the steps.

I know, to you, it may seem as if I am a perfectly healthy young woman. From the outside, you cannot see that anything is wrong, but I ask you don’t be so quick to judge. I really don’t mind people asking me questions — that is, after all, how we learn. If you had asked me a question rather than throw accusatory comments at me, I would have been more than happy to answer any questions you may have had. It wouldn’t hurt to remind yourself that you have no right to know personal details about strangers.

See, here’s what you don’t see on the outside.

1. You don’t see that I am in an excruciating amount of pain.

I’m only 22 but I have severe hip pain; it’s affecting my mobility, which is why I am in a wheelchair. I haven’t had my meds in a few days because of all the nasty side effects I was experiencing whilst taking them, so there’s nothing easing my pain. I can walk around inside my home because I am able to sit down whenever I need to, but when I go out I have to take my wheelchair because I am unable to walk very far due to the pain in my hip.

2. I’ve not eaten a proper meal in weeks.

I have a lot of stomach problems, which sometimes makes it difficult for me to tolerate food. This makes me feel tired and weak because I am not consuming enough calories to give me the energy I need to function properly. When I do eat, I am plagued with nausea so severe I find myself retching and doubled over in pain. At its worst, it’ll make me vomit back up whatever I ate or I’ll spend all night on the toilet with liquid fire burning my backside. The thing is: I want to eat, and I miss being able to eat whatever I want, but my body says no and most things make me feel really poorly even just by smelling it or looking at it. I already had one hypo that day; I’m not even diabetic but I’d just not eaten enough because of how sick I felt.

3. I partially dislocated (subluxated) my shoulder before I came out.

I was only braiding my hair, but one small movement sent my shoulder out of the socket. Subluxations happen multiple times a day in my wrists, shoulders, hips, ankles and knees. These can be incredibly painful, but I’m so used to them that I just get back up and carry on with my day. I am in pain every minute of every day; I don’t even know what it feels like to not be in pain. This all I know. I do not remember what it was like before this, or if there ever was a time when I wasn’t in pain.

I have a condition called hypermobile Ehlers-Danlos syndrome (hEDS). It affects many different aspects of my life and body, and it causes my joints to be hypermobile. This causes a lot of pain, and it also affects me internally. EDS is a condition that causes defective collagen production, which is the connective tissue in our body that holds everything together. My heart is one of the organs involved; I have a heart condition that is pretty serious although asymptomatic. Because of my EDS, I also have endometriosis which is characterized by extreme abdominal pain during my menstrual cycle and caused by uterine tissue having formed outside of the uterus. The lining of this tissue breaks down during the menstrual cycle just as it does during a period but because the tissue has formed outside of the uterus, the blood has nowhere to go which causes excruciating levels of pain.

4. I experience chronic fatigue.

Finally, I have myalgic encephalomyelitis, formerly called chronic fatigue syndrome (CFS/ME) — the name of the condition is self-explanatory — and I have a whole host of other issues.

So, before you are so quick to judge, just think about all the possible reasons someone may be in a wheelchair and if you can’t say anything nice, then leave them to it.


The young woman outside the pub.

Photo by Max Ilienerwise on Unsplash

Originally published: March 26, 2020
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