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!
the myasthenia kid 
I have to say I am absolutely appalled by the way people behave. I have never encountered this and I can’t imagine treating another human being in such a way.
I hope your sister, your friend, yourself ,as well as,others will be treated more kindly in the future. I feel like that is all I can do is hope.
🙂
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Hi Bee,
Thank you for reading and commenting.
Until the government and the media in this country stop labelling disabled people as scroungers and layabouts I fear nothing will change. We are seen as the enemy a drain on state finances.
I can only hope at the next election they are voted out and prosecuted for the hate crimes they have committed against the weakest and most vulnerable members of society.
Thanks
Rach xx
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It’s like being asked by a new Doctor or ‘Healthcare Professional’ why you’re in a chair [mostly they ask if I’m ‘Wheelchair Bound’] and I respond with “do you see any ropes or chains?” Of course I’m not ‘Bound’ to my wheelchair. ME: “With assistance I transfer into bed and out of bed so ‘no I’m not “Bed Bound” either. I say that I’m a ‘full time wheelchair user’! Or DOCTOR ETC.: “is it purely due to pain that you cannot walk?” ME “Have you actually read my notes?” DOCTOR ETC: “Well I’ve skimmed the relevant parts” ME: “Relevant to What exactly?” DOCTOR ETC: “To what you’re here for” ME: “So you don’t consider that knowing as much of my history would help you deal with me now?” DOCTER ETC: “erm, ah, erm”.
The problem with the NHS is that they’re set up to deal with “ACUTE” Medical Situations. “CHRONIC” Disability/Medical Conditions stump them especially as it relates to the acute problem you’re there for. It’s like seeing the same Consultant for two separate conditions [though possibly related] and being told that, despite or in spite of that and that the effort it takes to attend, you have to have two separate appointments. Does that really make any sense? If you’re seeing a Medical Professional surely it is better that they actually prepare before seeing you? Having a Spinal Cord Injury and a condition that is not on the normal Hospital Doctor’s Radar does not mean it doesn’t exist. Doctors should, by now, know that they’re not infallible, and they’re certainly NOT the founts of all knowledge. Hence the need to do more than skim “The Relevant Parts”. The disconnect between Acute and Chronic “Disability” Related and “Medical” Conditions is vast. The introduction of Personal Health Budgets/Continuing Healthcare should presage a more “Holistic” system, even if it could lead to a more privatised Service. If the NHS does not see the shortfall then they’re going to have to fund healthcare/therapy outside of the Hospital setting, Hydrotherapy is a case in point. Is that cheaper than the Hospital setting? Is the search for “Relevant” and “Useful” Therapy/Treatment to be laid at our own door? If so who is the Arbiter for what is “Relevant”?
The conflict between the “Social” and “Medical” Models of Disability is unlikely to be resolved in this Forum or other Fora but if we as individuals bring enough pressure to bear, especially when you consider how long it is since the Campaign for “Equal Rights for Disabled People” ‘Won’ only to be ‘partially’ overturned by this Government and for Human Rights where they intend to Repeal the Human Rights Act and withdraw from the “European Convention For Human Rights” are going to imprison “Radicals” if “There are reasonable grounds for Suspicion” and that’s any “Radical” who calls for/is involved in “Social Revolution/Upheaval” [here I am Mrs May, bring your Handcuffs]. Never mind, Magna Carta [a narrow reading of it of course], never mind 350 years of British Jurisprudence, Guilty until proved Innocent oops sorry I misread my Autocue just like Cameron] that should be Innocent until proven guilty of course, a sort of Freudian Slip, just like the difference between “Resent” which he used and “Respect” which was his intentions ]sorry again, his Speech Writer’s intention]. The poorest are going to be better of because of their intentions on reducing Tax in the next Parliament [if they’re elected this time, remember they weren’t this time]. Yeah because the poorest pay Tax NOT. Those that do earn more than £10k they’ll save £500 over a year, there or thereabouts, whilst somebody earning £100k will save £5,000. Hmm the poor really are going to be the winners aren’t they. It seems to me that all that you and Lucy and I and many others who have like experiences are not going to be the winners just as I know that at least 2 of my consultants wholeheartedly agree with the Tories and how their policies will affect you and I. It certainly gives you a warm feeling, doesn’t it that not even your doctors are invested in your wellbeing outside of the narrow confines of their job? This may seem like I am digressing from the subject of your Blog Rach but my overarching point is that there is a vast reduction in Empathy for those less able in society, including “Disabled People”. Whether one believes in the Social or Medical Model of Disability the idea of Empathy, or lack thereof should not be in question in how we, the poor, the unemployed, the dispossessed are treated by the Public Sector, the Private Sector, the Political Class and the Media. But it is! It is a subject that is banned as the way of understanding those less well off than themselves by the Tories in particular [especially in the US and what is current in the US soon finds currency in the UK] it is considered as weakness and therefore a non-issue in policymaking.
For instance During the Nuremberg Trials an American Intelligence Office and Psychiatrist [Gustave Gilbert I believe] who was the main interrogator of “The Defendants” Göring, Dönitz and Speer for instance noted that they were highly intelligent. All had extraordinarily high IQs [so would be expected to understand] he also found a complete lack of empathy for those that were their victims in the Holocaust, not just the Jews but Disabled people, Priests of all persuasions, Radical Academics, Artists Authors, Musicians [whilst in no way trying to identify us with those that were murdered by the Nazi, nor that we should be wearing a “Yellow Star” as suggested by some Disabled People who have been mistreated by the Government;s Austerity Packages, roll back on Welfare Benefits and ATOS for instance, something I came out against on Facebook and was hounded off for disassociating myself from] my point is that the lack of Empathy is a weakness not the reverse. If you are unable to understand [or refuse to consider the idea of] what it is like to have a Complex, Chronic, Long-Term Disability or Medical Condition or those who live in “Generational” endemic poverty, those who work all the hours that they can to feed their family and paying the bills and still have to use a Food Bank to be able to make ends meet, how can one possibly be so crass to suggest that such people are living “High On The Hog”. Most of us would happily give up such a “Stigma” and return to full time work, I know I would. To be treated as a Pariah because of Disability is anathema to the idea of a Just and Fair Society and the Tories on the evidence of the past week on the BBC the antithesis of such as the Just Society. Their policies enrich the Rich at the severe cost of the majority.
Sorry, this has turned into a bit of a rant but it isn’t intended as that. I’m trying to pick why I believe that ‘our’ situation is not set to improve any time soon. Sad to admit and it’s not the same country that I served to protect. Everything changed for the worse in 1979. Why, for instance do so many people believe that immigration is the cause of many of this country’s ills? When so many jobs have no, yes truly, no British Applicants who do we expect the business to emply? At the same time many of the top companies in the UK refuse to employ those who have been in receipt of long-term disability related Welfare Benefits. Who is at fault there? It is not the case that Disabled People cannot work it is that too many willl not be considered for jobs and I speak from personal experience and with this being indicative of how Disabled People are perceived you have to wonder when we will be taken seriously under such a climate. I hope that that makes sense.
My very best to Lucy, and to your Mom Rach. Take care
Kind Regards
David
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Hi David,
Please do not apologise for writing something so passionate and complex yet hitting the nail directly on the head. You are right in every aspect of the points you raise. I have no argument that I could put forward that would better it.
What is taking place at the moment with this coalition government is social cleansing. I agree we are not at the point where we need to adorn yellow stars, we are at the start of the Nazi regime 1933 as it were. As they started to spread their evil message and demonise those in society that were weaker and more vulnerable than themselves, it is being replicated here and in Australia where the right is in power also.
When we have a lot of medical professionals that do not understand disability – I have issues around my gp and consultant not understanding the levels of fatigue I suffer with for instance today I am hallucinating because I have had three nights with very little sleep combined with morphine. Luckily they aren’t scary hallucinations and I realise as soon as its happening that is what it is yet if I raise this with either my gp or consultant I feel I am disbelieved. I talk about it more in a post call can you hear me. Because dealing with these so called professionals is like banging your head against a brick wall! If the people that are supposed to be experts in our conditions lack empathy and compassion then we truly have lost because how can we expect the general public to understand.
Your political points are excellent I have no counter argument because I again agree with your politics. Since 1979 we have created a country full of people that only look out for themselves no wonder The Big Society initiative failed hey Dave? I hope Mrs May is reading because I am probably on many lists!
I want to thank you David for being so passionate. I look at it this way its one person at a time that we need to educate and show them how wrong what is going on is. Yesterday I posted on facebook something about the Living Wage. Staunch Tories actually liked the post when I explained to them paying the Living Wage would reduce the benefit bill and actually massively improve Britain’s economy without the need for austerity. If you break it down for people in simple terms they start to get it.
The problem with politics at the moment is it is all about soundbites and unfortunately Labour are also playing this game. It means the voters attention spans are about 30 seconds. It sounds good so it must be good but as always the devil is in the detail. They believe they are voting for one thing and are shocked and stunned when they receive another.
How many lies does Dave have to tell before he is exposed. Clegg was exposed on tuition fees but no one seems to be calling out Dave with his NHS reforms or selling off our hospitals, closing maternity wards and A&E departments. All things he said wouldn’t happen.
Sorry this has turned into a rant come additional blog post! Anyway I want to say Thank you David for taking the time to read and comment on my blog. Thank you for caring about my family and I just wanted to say I hope your family are all ok.
Rach xx
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