I live a life that no one envies. And if you have a chronic disability, you probably do too.
Was that too direct, or do you want to tell me that this was choice three: #1 – Teacher, #2 – Librarian, #3 – invisible chronic illness even your relatives don’t fully research, believe and want to understand, and living the high wire emotional act of being dependant. Really?
My life is the kind of life where doing what I want, like blogging for BADD will always come behind the intractable aspects of my illness/disability. Life’s natural joy and excitement are now something to be bartered for. And that isn’t really the way things should be.
NO ONE should be born a second class citizen, and no one, particularly while helping keep many medical supply companies/doctors/medicine makers in profit, should become one just for being disabled. Yet many are. We are.
As a society we collectively set our sights too low. We can do better.
See, we have to do better. I have to do better, to learn, understand and being there for people with different impairments/disabilities/illness’. I have to fight as I can so that the quality of life of those with disabilities, and their value within the society will be higher, for those who come after me.
I believe a fully integrated society which values the insights and full participation of those with impairments/disabilities/illness’ is a better society. But that idea is not THIS society.
The problem is us. We blog in BADD often about ‘us disabled’ versus the AB, but the problem is just ‘us’: ALL of us. We all accept too readily the systems’ failure. With 1 in 7 having impairments/disabilities we already knew before we became disabled of a friend, family member, or someone close with a disability/illness and accepted that trying NOT to go through the system is what is important. 1 in 35 get MS. You really don’t know 35 people? Not even at university, or restaurants, grocery stores, neighbors? I have three neighbors with disabilities before I leave my own apartment floor. At university I knew many women with MS and what did I do to change the discrimination I saw directed at them? Where was my DAMN EMPATHY when I saw her struggling with the foot controls of a Dictaphone and heard the head of department discussing ‘how long they would have to keep her on?’
In a JUST world, I should be serving a community sentence, being forced to learn to care, or if I am a sociopath, learn to at least help.
But then are we a society of sociopaths, narcissists or just selfish people? If you want adult PEER PRESSURE, that is what every commercial, homepage and TV show sells. It is hard to have an equal and integrated society when even being facially different brings public scorn (72% of Brits feel that Susan Boyle should never have been allowed to appear on ITV’s talent show. After winning, she was offered a role on ‘Ugly Betty’).
We, collectively need to do better. My province has put on an high bonus for every time a doctor sees a patient with a chronic disease, because so many refused to take them as patients before. So now instead of punishing them for discriminating, we reward them for seeing well…us. Perhaps none of the Doctors or Specialist in BC read the Hippocratic Oath “I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone.” Or perhaps they never bothered to tell the doctors that they would see patients, sick people – that IS the job of doctors, to see people, well, like us. To help people….like us.
What should been done in North America and in other countries is to raise the bar of acceptable standard of behavior for doctors. If a doctor ignores the main source of information (the patient), belittles them, assumes they are lying, assumes they are lazy, assumes because they are female it is: trauma, PTSD, depression, hormones, or ‘in her head’ – a complaint should be taken as seriously as a physical complaint. Because the ignoring of her, and her condition, the delay in treatment for her chronic illness IS a form of delayed physical treatment and well being – as harmful as an assault. They DID harm, and they should, since they seem incapable of having the morals to hold to their oaths, be held accountable. Often, sadly, the entire medical system can be a form of abusive emotional, physical and psychological assault.
I have yet to be able to take a MRI, CAT scan, or any other table test, including radiation injection testing on a table where I able not fully reclined on my back, often unable to talk and breath. Not the rarest of conditions, just one two entire HOSPITALS don’t bother about.
We (society) need to do better.
Having a near 80% unemployment rate for those with disabilities surveyed when the general population is 4-8% isn’t sad, it is an open declaration of the second place status, and social status warfare view of people with disabilities. In the last few hours, I have read three items, two books, and one a major advice column, all seeing the disabled, or those with disabilities/illness’ and facilities as to be ‘used’. Hey, problem with having opposite gender children to find someplace to pee? Then find a ‘handicapped toilet’ to use instead of a man going in the women’s restroom with his girls. The two books I read, both had the disabled/chronic illness characters, the OTHER main character in the book, and both die…..so the main character could learn a LIFE LESSON. Both these teen books were on the New York Times Bestseller List. A new generation learning ‘life lessons.’
We can do better. Where IS the disability awareness fiction section in the juvenile fiction section of the local library? Where is the display? (probably next to the invisible LGBTQI one). But at least LAMDA has the LGBTQI awards? Where are OUR awards, our book awards, our film awards?
But we, those disabled and with disabilities/illness’ are just as bad in ignoring. We find our groups, we band together and we bunker down. How many times have I heard, “Oh, I’m just glad after six different ones I finally found a GOOD doctor.’ – so an ‘I’ll find mine and then, finally, done.’ mentality. When do MS and CFS/ME get together to talk about fatigue? When do Fibro and SMA groups get together to talk about muscle pain? Or cancer and SCI groups get together to talk about dysautomia? They don’t.
Change Society, decrease an 80% unemployment rate, hold doctor’s accountable, change medica with awards and Disability Rights ratings of major corporations? Really? Let’s be real, right? OR, are all these things, as they say, ‘tried hard and found lacking’ or ‘found hard and lack in trying’. I am not asking for those with disabilities to change society, I am demanding society change itself! When most countries have a ‘no child left behind’ program, why then is there a ‘fend as fend can’ for those needing assistive devices, employment or assistance?
I have heard countless presidents, Premiers and Prime Ministers talk about the ‘New Economy’, but never about one where leaving over 60% of 1/6th of your workforce behind is outlined. It just HAPPENS. No. It doesn’t. Not in countries with human rights and disability acts, it doesn’t ‘just happen’ is simply isn’t changed from what happened before. The: “We don’t give a damn, because they are too diverse, too ill, and we are too used to this way to change.”
How is it possible when every family MUST know someone with a disability not to organize for basic things like recognizing that in the same way you get shoes and clothes after an accident, not understsanding that getting assistive devices for impairments are the same? How long until recognizing that the old models of looking at work as an assembly line (created in the 1910’s) and every worker as the same is a LIE. Right now we have the technology to employ as many of those with chronic illness’ and disabilities at the levels they can and desire to work. Right now. Except the very companies that make the software, that run the platforms, the top 500 companies are not rated on how they have advanced in employing numbers of those with disabilities. Not even in the Human Rights index. And the government…..it is easier to simply offer money, then portray those on disability as cheaters. OUCH, the BBC disability website regularly runs news highlighting cheaters caught on disability.
Why?
I went to the optometrist and it was ‘assumed’ I was on ‘blue’ which must be some code for disability welfare because once the worker found out I was actually using employment blue cross, they were rendered speechless.
That same day the paper ran an ad on how a half marathon is fundraising for wishes for people with terminal cancer…because the last director stole $100,000. I am positive he was not disabled, or a cancer survivor. He was just another of those who handle the programs, determine OUR objectives, all without talking to us. . From Crip camps to Respites, there are workers who want to talk to significant others, who want to get home, who want to have a paycheck, but they do not see us as the boss. Yet, without us, there is no job. We ARE the job.
I asked how often the care feedback forms came and when there is government review and implementation. I was looked at strangely. The managers, the RN managers, the health care middle managers might have feedback forms to give to government about client care….but what does that have to do with me?
“Errr….I’m the client.”
I am more than my wheelchair, I am more than my breathing device, I am more than my illness, my disability. And so are all those others out there. So are all those with invisible disabilities. So kick it in gear society, kick in it gear about real equality because we all know someone, and we all know the stereotypes (if we didn’t we wouldn’t keep saying, “Kill me if I ever get like…..” – what? Like me?). Stop trying to find the loopholes to the good doctor, the small good parts of the system and accept that it is broken.
Burn it. Rebuilt it. It wasn’t an accident that every wheelchair user in hurricane Katrina was killed. I was fascinated, so I watched 4 disc documentaries, washed away, left behind, left to die, left without medicine and without care for days…in a country that calls itself ‘The World’s Superpower.”
The world is seen as a comic book, according to language. But if a ‘power’ isn’t used to help (much less a ‘SUPER power’), I would kindly say, “What use it is?” But what I think is, “Well, isn’t that what separates the Heroes and the Villains?” It IS a choice.
That is my blog against disability discrimination
Posts
36 minutes ago
26 comments:
Really great post, Beth - it makes me pause to think and I reckon it will have a great impact on others too.
Fantastic Post!!!
Makes me think how much my illness has defined me over the years.
Your comments on the "disability cheat" I found very interesting.here in Australia the cost of living is rising all the time and some disab pensioners have found it cheaper to live in Bali or other SE asian countries, for several months at a time,and return home periodically to retain there benifits including medical,as it is so much cheaper to live there on a week to week basis.. Well hue and cry...I work xxx amnt of days, I cant afford to go and live on a permanent holiday blah blah whine....
They miss the point...these same people would not employ these oldies as they are disabled and ...old (50+) as well.( I don't think this is old,nearing this age myself lol) and yet they feel they should have some say in how they live on the meagre amount alloted to the disbaled.....because it comes out of their taxes.
Wow. This merits much better response than I'm going to give it.
One thing which strikes me rather strongly is that far fewer than 1 in 7 of the 'average' person's acquaintance will be disabled (leaving aside the questionability of such statistics); because we probably aren't in the workplace, and often don't get out to meet that many people. Also because those of us who can 'pass' do pass, at least a certain proportion of the time, either by policy (because although my political self is convinced that it's wrong, my surviving self knows it makes life so much more manageable - and so we're both oppressed and oppressors) or by unwitting obedience to cues, so that even if they do know us, they don't know they know us.
I was at the theatre on Sat., a very enlightened, community-minded, LGBT-friendly, etc. theatre; even with a good proportion of wheelchair seating, I would guess more than is legally required. We were in the (cheap) restricted view seats: and the view wasn't that restricted. But in front of me, and with an even more restricted view, were the wheelchair users.
(One in one of those excellent chairs which *don't* place the user at crotch-height, who therefore was concerned lest he obstruct anyone's view. I won't pathologise that, disabled people are entitled to good manners too!, but I noted it.)
Not good, I thought. My friend and I chose the restricted view seats. Wheelchair users get them whether they're willing/able to pay full whack or not. So I have a letter to write...
And that's us already doing much better than we used.
I wonder whether, before the internet, and its wonderful indifference to (most) disabilities, I'd have noticed. I like to think so, but I rather doubt it. It's a truism that privilege seems natural to those who have it.
Great post! Thank you for writing it! Hopefully it will get through to people.
Excellent post, and you're right, we are all responsible for moving towards that better society.
BendyGirl
When do ME and CFS/ME get together to talk about fatigue? When do Fibro and SMA groups get together to talk about muscle pain?
In the case of ME sufferers, mainly in online support groups. Don't forget that a quarter of PWME are house-bound and a fair number of those are bedridden. They couldn't get to the support group and occasional outings to the hospital make them ill. There are various ME clinics (in the UK at least), but some of them offer inappropriate therapies such as graded exercises, when this can in fact make the patient more ill.
Also, muscle pain is a major symptom of ME (that's what the "myalgic" bit means), often to the point of a patient having to be on a syringe-driver for a constant morphine supply. Fatigue actually isn't - what ME sufferers get is a kind of crushing mental and physical debilitation, including memory loss, often to the point of being unable to read or write or recognise people. You might like to read this article which sheds more light on the difference between "chronic fatigue" and ME.
This post is awesome, Beth. No one calls "bullshit" on our deluded mindstates like you do. This is so rousing!
Beautiful, beautiful post.
I thought you might be interested to know about the Schneider Award, given to 3 children's & teen books a year that "embody an artistic expression of the disability experience for child and adolescent audiences."
http://www.ala.org/ala/awardsgrants/awardsrecords/schneideraward/schneiderawardrecipients.cfm
Thank you Beth! Great post. I have a slew of autoimmune diseases that might have been prevented if doctors had bothered to diagnose my Lupus & CVID 2 decades ago. I was not listened to, was belittled, considered a hypocondriac, an exaggerator. Some doctor prejudged me based on my appearance, the fact that I was a woman, their own assumptions about my personality. Oh, and the awful presumption I took in actually asking questions.
The issues you raise are so very important & you eloquently tell us why. It should be all of us together, the society of human beings. And it is so sad that we live in really, quite priviledged country and yet we are left behind, left out. People do not even have to encounter my disabilities or think about people like me. The ones who have become invisible because we are homebound, have lost our friends over time, have no support system to help us or our spouses/caregivers. And many, like me, have to expend what little strength we have fighting to get the medical care due us. I just spent 3 months of my life fighting my insurance company to keep them from stopping coverage of my IVIG treatments. There should be help for us, inclusion for us, awareness of us. Who is there that knows me? knows what I have still to offer? that my friendship is a gift? Only you Beth & those in our community here and a few of my relatives. Who will remember me? Why must I be left behind?
Sharon
Matthew Smith: I was referring to MS, and got a letter wrong, thanks for helping me with that, it could also be Lupus and ME or ME, Lupus, MS and then I guess we could add ME and Parkinsons' to get together. I had read that 'fatigue' in a medical sense is when the fire alarm in your building goes off and you just don't care. That is what I tend to refer to when I talk about fatigue.
I prefer the terms: "House sitting", or "Creatively lounging" this week to Housebound (unless chains are used sexually, in that case call it what you want....foreplay?), and "Ass ornament" to bedridden - or "Pillow and sheet tester".
So then the ME individuals get together with the fibro or SMA people online. Thank you for the viewpoint, and I changed the ME at the start to MS - but the topic before was, "We find our groups, we band together and we bunker down." - as I think we have all found out now, no one really cares about our severity until we are willing to care about others as well. And moving from the 'my group only' attitude is a start.
Also, yes I am familiar with the medical viewpoint of Jodi Bassett (due to the doctor who came up with that theory being about 80 miles from me).
Kathz: Thanks, I hope we start dealing macro instead of micro.
Iwasn'tblogged: Totally. People get upset if people with disabilities are allowed well, any of the minor qualities of life which they would want for anyone. The whole point of disability is 'not the person's fault' - so why are they in the same lumped basket most mentally place 'too lazy to work' - because they have been told that again and again. There is no reason PWD should not have the same security and equity of any other person working toward the goals of life - but somehow, if we are living some Dickens, crust to crust existance, we are cheats?
Well, I worked and paid taxes my whole life, I paid into pensions in three countries, due to odd loopholes, I qualify for naught - so that's right, my funds go to others, and I am happy, indeed, I wish they would give the people on disability pension a BIG HEFTY RAISE in the US, Canada and the UK (all places whose governments took money from me for services provided to others).
Baba Yaga: When our megaplex renovated they took the disability seats out, put in 'deluxe seats' (charged double) and made a small indent at the far left of the front row of the screen and called that the disability seat. Every wheelchair user complained. But since they are not the upper management who came up with the idea, what does that matter - well it should as it puts a price on human rights and equality. The idea is that disability usage will be less used UNTIL the society is changed so the 1/6th or 1/7th of the population is seen. To make the seats, toilet areas, parking areas and then blame socially blame the people who are unhirable, who are neglected for income support, and then use those areas or, for example as was done here in BC, eliminate a disabled toilet and make the space into an executive office (since they don't hire anyone who uses a wheelchair, they don't need it - that was the actual reasoning).
If the judges used the standards of basic allimony, add in medical costs and then spread the requirement to accomodate to hire or pay anyways to top 1,000 business', the income of PWD would be more equal to that of the middle class. And why shouldn't it be? Unless this is Marx reinterpreted - not a race war, not a class war, but a body purity war.
Wendryn: Thanks
BendyGirl: thanks, and I want to create accountability. True Accountability. Top 50 Canadian Companies and how they rate in hiring people with disabilities? how they accomodate? How they build facilities? What percentage of the parking lot is dedicated to blue badge? How quickly are complaints regarding issues like lighting or accessiblity to technology dealt with? That is what I want to do.
Lailah: Thanks you for making me aware of the Schneider Award - I will write to them to try and get them to EXPAND that and make my local library aware of the winners.
Sharon: I agree, we should have the kind of advocacy that universities and governments provide. There should be legal watchdogs on insurance companies who do the fighting for us, because right now, the only fear is 'looking bad' - you have better luck getting getting a VP of media relations and asking, "My name is Sharon, and are you discriminating on my human rights in denial of treatment or is my living no longer cost efficient for you? Just to let you know, I am taping this for training purposes."
These people would not accept being turned down, the mega-managers, nor when their children have diseases do the apply the rule of 'reject automatically two times' to themselves. HMO's have been opened to watchdogs and IF the US had signed the international treaty, there would be Senior Staff standing trial in the Hague for callous disregard for human life and suffering. Too bad it is just passed off to another subcommittee - would that be more people making money and going home, not actually caring about the people they are talking about? Yeah.
Thank you for (I'm sorry, dear) inspiring me, Beth.
One of the higher-ups at work is a wheelchair user; I'll email her today to see if SHE can have any success in making my workplace more disability-friendly.
Clayton Gerein (a former neighbour! and Paralympian) has inspected the building twice, and made recommendations, but not a single thing has changed.
And there's one thing many people SHOULD envy you for, Beth. You and Linda have the courage to be married in a society that isn't very gay-friendly, and you have a more stable marriage than many.
I salute you and your wonderful spouse. Here's to Elizabeth and Linda!
Love and zen hugs,
Neil
This actually ties in with something I'd wanted to post about, an article in the NYTimes a few days ago. Bent, Not Broken
My reactions, in order, were:
1)Oh lord, another Inspiring Gimp story. You know the kind I mean.
2)She went through all that to get a degree and a teaching position and still can't get to her classroom regularly because of the elevator? Not to mention all the other slights and insults she goes through daily. And that's with a very visible physical disability that only affects motor neurons.
3: I had a good cry. Because that's what my friend James, whom I miss very much, had. Nobody ever bothered with spinal surgery though, so he died of pneumonia 6 months before his wedding.
I get so sick of this! Plus not only are we looked down upon by the AB, there are the hierarchies among the disabled too, as you well know, Beth. The SCIs look down at everyone else on wheels, the purely physically impaired hate the degenerative disorders crowd, who avoid the developmentally disabled, and everyone hates the ME/CFIDS/CFS and Fibro folks for 'pretending they're disabled'. Oh and heaven forfend we should gain weight because we can't exercise. Then we're not disabled, we're just fat. If we just lose that weight we won't need assistive devices any more.
How can we get anything done when we can't even get along with each other? How can we expect others to give up these beliefs if we won't?
*deep breath* Okay, I'm going to shut up now before I get started on the women/depression/all in the head thing again. Time to go look at pictures of kittens or something.
Which doctor are you referring to that lives 80 miles away from you? I know that Jodi Bassett is particularly fond of a Canadian doctor called Byron Hyde (he is well-respected in the UK as well), but he lives in Ontario. I linked that particular article by her because it contained less theory and more about lived experiences than some of her other papers. (They are quite repetitive and that's probably because she's too ill to do a lot of original writing.)
Could people with different types of disabilities be expected to get together to discuss their illnesses, though? If the lived experiences of ME and, say, MS, are so different, what would there be to discuss? People with MS tend to get physical impairments first, while those with ME get the exhaustion and cognitive problems and pain. People with MS in the UK have been campaigning to get certain drugs prescribed on the NHS; people with ME have a struggle even getting people to accept that they are ill until it's too late.
About the definition of "fatigue": what they experience is more like a state where they physically couldn't get up, whether they did or didn't care. Another is when they couldn't get up even if there was a large quantity of cash two paces away from their bed. A lot of PWME hate the term fatigue, not only because they think it fails to describe their condition but also because it allows others to think they're just "tired all the time" or even just lazy.
As for what to call those who are housebound or bedridden ... well, perhaps you should suggest that to them!
Matthew Smith: The doctor who got M.E. and then decided that it was a 'real' disease and came up with the heart theory, there is a video of them presenting it on the web, I think at a canadian CFS site. He was in Vancouver as it was suggested I go there since female+unknown disease=CFS. Maybe he has moved to Ontario now. The Canadian Government did a very good documentary about early outbreaks and the Denver doctor who was or still is holding over 1,000 individuals blood and other samples until the CDC decided to investigate it. Unlike earlier outbreaks, women aren't put in asylums to get electroshock, thank goodness.
"Could people with different types of disabilities be expected to get together to discuss their illnesses, though?"
Yes.
or 'could men and women be expected to get together and talk though having radically different brain development?' or 'could gay men who are attracted to males and lesbians who are attracted to females create a bridge group for collective understanding and rights?'
Trying to find accurate descriptions of fatigue and the similarities and differences in each would be one thing to talk about, same with brain fogs, muscle weakness, etc. If the logic is, "M.E. is so different so no one will understand it and so dibilitating that no one can have it and do anything" - well a) That excludes anyone without M.E. from understanding or even helping facilitate accomodation for those with it and b) alienates those with M.E. who do not fit the absolutes presented.
"until it is too late." Is there a life shortening stat that I am unaware of, I know the four identified types of MS each have life shortening stats to each but was not aware of another M.E. life shortening stat.
I think this fortress mentality like "People with MS in the UK have been campaigning..." instead of 'advocates of MS treatments have been campaigning' illustrates the very problem I brought up. MS is 1 in 35, and if only those with MS are to give a damn about MS, or only those with M.E. or only those with Lupus (1 in 750), with lymes, with SMA, with SCI, with CHD, with Parkinsons' are 'allowed' to advocate, then no a great deal will happen. If instead of holding ourselves accountable for all the advocacy while having an illness/disability/impairment, instead we are part of a society in change, or helping society change, it becomes less onus and far easier.
People can choose their own terms, I know some who prefer to use the term 'wheelchair bound' and 'crippled', but that isn't how I tend to refer to wheelchair users. Those are my terms which I use, and which I humorously talk to my friends about. If you seriously want to campaign for the term 'housebound', um..........why?
Neil: Good luck on getting change. I have found that there are a 1,000 reasons people have for not changing even when it is so absurd like Triumphs policy that all people MUST exit out the back door in case of fire.....except that it is not wheelchair accessible - they won't make a ramp, they just make you sign a paper saying you are aware you are SUPPOSE to go out the back door, though physically impossible and so not sue them when you burn to death (zombie litigation).
Deadrose: Yes, we need to wipe the stereotype slate clean and learn again. And I don't know how that is possible without listening to the people involved and have them interact with other individuals. Of course, the one thing we can be sure of is that the 'Authority' and 'specialist' on this will not have had the illness/disability, will likely not accept that there is variation in it (like how here the two 'authorities in MS' both AB only believe in two types of MS, and that they should ALL have standard presentation - and no spinal MS exists).
Great post Beth as always. :)
Awesome post! A rant, a call to action and an expose ofa society that keeps the marginalized in their place. Marxist analysis is the only one that makes sense...
We have no power, because we have no money because assistance rates are kept at a minimum. And we're too damn busy surviving to lobby, which means we're perpetually stuck in being the job for well-meaning people who want to help the cripples (or con men who want to defraud us).
Makes me sick.
Your last comment reminds me, Elizabeth, that there is a doctor who has dysautonomia who has posted youtube videos about the condition and its underdiagnosis--she wants other people to know about it and to recognize it in their patients since it's missed and more common than people think.
I thought last night of starting a support group here for acquaintances/friends of friends with chronic illness or disability--a mixed group, spondylitis and cancer and back pain and a couple of people with rare disorders, etc., and go from there. While illness-specific groups are very helpful for education and treatment of a particular condition, there's a lot that transcends the specific illness. Some of the bigger issues--the human rights issues, the employment issues, the loneliness/abandonment from others--get missed because of the focus on medical information. I'm not knocking access to medical information, just wanting something more. In the US we have the Leukemia Society, the breast cancer organizations, the prostate cancer organizations, etc.--but there are Gilda's Clubhouses that bring together patients with all cancers; and we need something even broader.
Interdisciplinarity--the same as with academics. That's what's needed. More conversation and collaboration between disabilities and illnesses, with as you say, less hierarchy.
I use the term "housebound" for myself but don't really like it--I don't know of a shorthand alternative. Mostly I want to convey to people, "I'm alone and am at times in true and desperate need of company for psychologic survival."
I want to know much more about ME after reading this. (I don't like the term fibromyalgia because it seems dismissive of patients with it (fibro=?fibers?)). I've been invited to one of those fibro exercise boot camps--I'm not sure why the hospital sent me this info. The big thing with the exercise programs is that they're huge money makers! 40 hour programs for 2-3 weeks--that's a big chunk of change. Another person I know who was recommended this kind of retraining just felt guilty, like it was considered all psychologic. She swims, walks, is active as she can be to the point of collapse.
1 in 35-MS--I had no idea!
Wow. Powerful post. I've actually done a recent illustration dealing with disabilities, and I'm working on a series of illustrations involving the replacement of amputated limbs with robotic prosthetics. Anyways,if you know of any groups or organizations that might need a illustration let me know. your post was very inspiring and I'd like to be able to help out.
OK ... so that can't be Byron Hyde, because I just read the interview he did for the Tymes Trust's magazine in the UK in 2007 (PDF here, starts on p.16) and that's not how he became interested in ME.
What I meant by "too late" is that their condition worsens and they end up bedridden (or whatever you want to call it), quadriplegic or both, as happened to Lynn Gilderdale. At that time there was a lot of ignorance about ME, and it wasn't known that dragging someone with an acute and aggressive case of ME round town when their body was giving up on them was a bad idea. That was the most graphic example but it's fairly well-known now that over-exertion is bad for someone with ME and so, if you don't diagnose it fairly quickly, the sufferer's condition can get worse. (Actually, it wasn't unknown in 1992 either, but because of an influential group of psychiatrists who insisted that the condition wasn't physical, not enough people who should have known, knew.)
To be fair, Lynn's dramatic decline (it's pretty rare for someone to suffer that much permanent damage that quickly) may have been largely down to the aggressiveness of her illness, but having spoken to friends of hers, it does seem that the aggressive exercise therapies she was subjected to (and other stresses, including a stay in a psych ward staffed with people who insisted that she was faking it, and a sexual assault) did make her condition worse.
As for what to call people who are bedridden or housebound, I'm not "campaigning" and if they want to call themselves something else, I have no problem with that. I can understand why wheelchair users don't like being called "wheelchair-bound", but I've not seen any great objection by those confined to house or bed to the terms "housebound" or "bedridden".
As for getting people with different diseases together, perhaps the MD fraternity offers an example, as the MD associations serve people with many different types of muscle-wasting diseases: Duchenne's, SMA, mitochondrial myopathies, and others - the full list for the UK MD campaign is here. Some are purely muscle-wasting, others cause mental degeneration as well. Actually, around 2006 there was a lot of discussion on the LiveJournal severe ME group with someone with a mitochondrial form of MD (she went by em_30 and died in 2008), who had a lot of the same problems (severe pain, dependency on others, regular hospital admission) as those with severe ME, so perhaps that's an example of people with different illnesses getting together. But there's always the danger that, in a multi-illness group, rarer or more controversial illnesses get overlooked, which is why people might not feel comfortable without a group for their specific condition.
What I like about this post and the comments that follow, is your vision that society needs to change its attitude, and that to do this people with disabilities could, perhaps, work more effectively for change by working together.
I'm with FridaW on the idea of a group for people with disabilities coming together to share experiences that aren't illness-specific.
It would seem to some commenters, that the idea of communicating with people with illnesses other than their own is so alien as not to be countenanced. Why? I have ME and positively detest the parochial and deeply politically divisive nature of the community in the UK. I therefore choose to write on broader disability issues, rather than restrict myself to in-fighting on a particular condition. It's the collective experience of disability, the macro, that's important, not what label you have and how you need it to be understood by everyone. Surely?
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Hello there,
This is a question for the webmaster/admin here at elizabethmcclung.blogspot.com.
Can I use part of the information from this blog post above if I give a backlink back to your site?
Thanks,
Jules
use what you want as you want - I'm not going to be around to complain - ha ha.
I totally get your idea of the 3 choices, also the thing about people who don't understand or even try to understand your disease. Yet they make judgements on disabled people. I actually got someone that after noticing my reaction, and other "nurses" attitudes, just looked at me and said, "You're upset over having lost your source of income". The sad thing is that she was the nice person there, and the only one at the time that helped. She also said that she would try to learn about my disease. Yes, they do get paid very well. If they could all be like that, it would be fine.It's ashame so many just collect the check, and assume your job really is to become a professional patient. Now, how dare I not be content with that?
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