My blog post Dear Norms (WordPress version here) produced a response on my blog, my The Myasthenia Kid page on Facebook, my own personal Facebook page and the comments section of both blog platforms that I could only dream about.
Although it was fantastic to receive such a response my heart was heavy reading other people’s experiences of being abused by “Norms” due to their disability. I have been very lucky to have suffered very few incidences of abuse. One of which I wrote about – Well if you’re that f**king disabled get off Facebook and take up knitting (WordPress version here). The abuse I received via social network when what had been a friendly discussion got out of control, upset me for days afterwards. I now know I had simply been trolled by someone who would not accept I had a different viewpoint from her. When she realised I couldn’t be bullied into changing my opinion she launched her vicious tirade culminating in “well if you are that f**king disabled get off Facebook and take up knitting”.
It made my anxiety about leaving the house much worse. I do not suffer with agoraphobia but the open hostility with which the disabled are met on a daily basis, causes me anxiety if I need to leave the house for appointments etc. Due to my chronic conditions making me virtually housebound, leaving the house is a big deal. I know that it will have consequences for my health, normally a rapid deterioration. Add in the highly likely scenario of facing some sort of abuse and or discrimination, leaving the house can have self-esteem / confidence implications as well.
One response came from my sister Lucy ( who I am hoping will be a guest blogger in the next few weeks ). She also suffers from Ehlers Danlos Syndrome Hypermobility type and Dysautonomia along with other conditions she has picked up along the way.
My sister has faced an enormous amount of hostility regarding her illness from day one. My sister was a medical conundrum back in the early 1990’s at age 14. It was just at the time that Yuppie Flu so helpfully named by the media was coming into the fore. What the papers failed to realise or accept was that the so-called Yuppie Flu was in fact a real medical illness Myalgic Encephalomyelitis or M.E for short.
My sister was accused of faking her illness, having school phobia and medical staff tried to blame my parents for her condition implying they were both suffering from Munchausen Syndrome By Proxy. Eventually the diagnosis was settled on she had M.E or Chronic Fatigue Syndrome, which it is also unhelpfully known as. M.E and Chronic Fatigue Syndrome has about as much in common as football and Ice Hockey but I digress as usual. She was diagnosed with Ehlers Danlos Syndrome and Dysautonomia shortly after I received my diagnosis in 2011.
My sister was so ill as a child (and still is) that she needed a wheelchair both indoors and out. For two years she was confined to her bed and suffered from epileptic like seizures. These were explained away by the medical profession as psychogenic seizures, the implication being that she was putting them on. It is believed to be some form of somatoform disorder / conversion disorder. (Isn’t it funny how we have both been told that we have a psychogenic illness?) If that was the case she should have received an academy award. The medical profession may have decided she wasn’t worth their time or effort but our family GP who worked tirelessly to try to help her. She did find as a young person in a wheelchair she was accepted on the whole by society. How things have changed.
On reading my post “Dear Norms” she was compelled to comment and this is what she said;
When we took my son to the out of hours doctors recently the first thing the doctor said was, “Is that your wheelchair?” I am so f**king sick of people in the medical profession asking me that question, especially when I am not even the bloody patient.That’s like me asking an abled bodied person if that’s their legs or a transplant donors! I feel like saying, ” No. I’m just a huge fan of Little Britain and I carry car bumper stickers with me all the time so I can pimp up other folks wheelchairs.” It’s beyond stupid, yet I come under the category of “Disabled!!!”
I was so shocked by what Lucy said I couldn’t come up with the words to explain the outrage I felt. On talking with her she told me it happens at every medical appointment she attends with a new doctor, whether she is the patient or her son/husband is. I am left scratching my head as to what the medical relevance is to the question “is that your wheelchair?” Especially when Lucy’s five-year old son is the patient.
I regularly get the question “Can you walk?” when meeting doctors whilst using my wheelchair. I understand they want to gauge what my mobility levels are but it is a highly offensive question when again it’s not medically relevant, such as when my bladder was in spasm and I was in acute urinary retention. The explanation from doctors would be that they are trying to assess what help I will need whilst in their care. The question is so loaded that I feel that every time I answer it I am being forced to justify my using a wheelchair.
For clarification I use my wheelchair for many reasons. The first is for safety I can be incredibly unsteady on my feet causing me to fall on numerous occasions daily. I can lose my balance stood still that’s how bad my balance issues are. Another reason is that walking causes me intense pain due to the Ehlers Danlos syndrome, knees give way or dislocate, hips have a tendency to pop out more than I do and don’t get me started on the mess that is my spine. My wheelchair is also used because of my Dysautonomia, my blood pressure can drop like a stone and when that happens I tend to as well. It happens without warning. Also being upright causes my heart to beat rapidly (130bpm) and this is exhausting. Yet my explanations are met with a wry sarcastic smile, it’s as if my conditions are disbelieved. The wheelchair is obviously just for show, I am a lazy cow who doesn’t like to walk anywhere. I mean wheelchair access is just so great nothing stops me……apart from stairs, escalators, badly designed kerbs etc.
Another person commented that her ex partner had used the word “spaz”, “mong”, “retard” as a term of abuse whilst they were in a relationship. Her children are also disabled so the ex wasn’t just abusing her but her children also. This made her see red and she smacked him in the puss – her words not mine. I don’t condone violence but when backed into a corner it can be a natural reaction.
A long time friend of mine whose comments you can see on my WordPress blog described being spat at and told to get out of his wheelchair and get a job. As he says the people who did this to him, don’t know him from Adam and they fail to realise he has worked for 40 years. Unfortunately all people see is his mode of transport, a wheelchair. The chair has become in their eyes his identity and he is reduced to being a leech on society, sub-human. This man, this friend of mine who served his country, was injured in the line of duty. Is this really the way we are going to treat wounded ex-servicemen? It makes me so angry that intelligent human beings are being degraded in this way by people who consider themselves normal.
I don’t believe that you can be what most people consider “normal” to treat another human being in this way. I am so angry but I have used up my profanity allowance for the day that I can not find the words to express how I feel.
It seems “Dear Norms” stirred up a lot of feelings for many people. It exposed me to some truly shocking and horrific personal stories. I just wish the people I was addressing in that post would realise the horrific damage they are doing by using those words and holding those attitudes. As a society we will never evolve if the disabled are seen as a drain on the country’s finances and not as human beings who have something to offer the world.
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For those of you who may have missed this I have been nominated for a WEGO Health Activist Best in Show blogging award! This is a huge deal. I need your help though. Please could you follow this link which will take you to my nominee page. All you have to do is hit the purple endorse button and leave your name and email address. Both your name and email address will stay hidden, so I won’t know who you are or will anyone else. I need as many endorsements as possible to help my blog go through to the final stage.
This is a huge honour and the stuff of dreams for me. I have had this on my wish list for the last year or so and I am finding it very surreal that I have received a nomination. Thank you to everyone who has endorsed my blog so far You Are Awesome!