Ableism, Classism & The Endemic Inequality in Healthcare (Think About It, Improve Consciousness)

We can be the kings and queens of our dreams

No matter how hard what's around us may seem

Just live to dream and so dream to live

respected for you are and what you have to give

Never give up and creating your fair chance

rise above denigration and baby you'll dance

That is a poem I wrote about six years ago. I had hoped that my own words would help lift some of the darkness of my life. I now have a tattoo on my arm which reads 'if you only knew' which is what the story of my life has become. For nearly two decades I have been grappling with an invisible, agonizingly painful beast that has for the most part overtaken my life. That beast is called Ehlers-Danlos Syndrome. The pain this invisible, supposedly rare (but actually just grossly under-diagnosed) health condition causes is only the first half of that agony. The other half is the oppression caused by its lack of validation-  - and thus adequate treatment options - in the medical system and in society. It's pure ableism. This lack of validation causes a lack of willingness to understand the nature of this disease. With this comes a gross lack of access to appropriate resources and treatments which can adequately alleviate suffering... There's even a lack of empathy for the suffering this disease causes. 

At the current time, I believe that healthcare inequality is hailed from, and is as a result of ableism. So ableism = healthcare inequality.

Doctors and other medical personnel are supposed to set an example. When they overall fail to validate an illness, its symptoms, the pain it causes, its debilitating effects, and the level of suffering all of that causes, society often follows suit. It's even to the extent that some illness sufferers' own families emotionally, and sometimes physically abandon them. Such is more or less the case for me, too, and man does it hurt. 

I know of many EDS sufferers who've been treated poorly, even abused or outright ousted, disowned, and abandoned by their own families. One woman died sleeping on a mattress on her parents' basement floor, her desperately organized baskets of both supplements and drugs all around her, thin, wasting away, and riddled with pain at the level of someone with bone cancer (and yes, EDS pain has indeed - by the few truly familiar with it - been compared to that of bone cancer.) She didn't die of her disease, though if left like that she likely would have, but she died by MAiD (medical assistance in death) which she had decided to apply for since she couldn't take it anymore; Her quality of life was just so poor and her level of suffering was so great, physically and emotionally. She is not the only one.

A few years ago a woman named Jennyfer Hatch 'released' herself in this way, too. What was even more shocking, though, was the fact that the Canadian fashion giant La Maison Simons did a commercial glamourizing her end of life pursuit... some people (including myself) were disgusted and infuriated with the notion of this company would do such a thing as opposed to raise awareness about the issues and in this perhaps funding for Jennyfer to get better care. But Jennyfer was clever; though she was tired, wasting away and so fed up she wanted to end things she went out with a bang by doing something she knew would be controversial to publicize the issue via shock value. publicize the issue via shock value.  I myself did a similar thing in 2022 via CTV news. Back then I was on tramadol, which was (compared to what I am on now) an inadequate pain medication for me. My quality of like had become really poor, there was no end in sight when it came to getting help from a neurosurgeon to fuse my neck, and I wanted to publicly talk about how I was considering MAiD too. When I came out saying that I was contacted by people who wanted to make a documentary... but as soon as they found out I was not going to go through with MAiD they dropped me like a hot potato. They just wanted to romanticize my MAiD departure as it seems, and to this day this really gets under my skin. I have a hell of a story behind me here and it's a real shame that they don't see the value in my living on and surviving all of this, and maybe even reaching a point of thriving. I just won a music award, and I really want to stick around living. I want to somehow find my way out of just survival. I have gifts that can be utilized to make this a real possibility, but there are also massive barriers that I am fighting. Overall though, I have a hell of a story and they are missing out on it since they only seem interested if I off myself. Arghs.

Like many of us, in order to regain some crucial quality of life, Kendra (the first lady I mentioned, who slept on a cot in her parents' basement) needed an extensive and specialized spinal surgery which our country was and still is refusing to provide. Even more shockingly, they also refuse to pay for out of country care, even though there is an out of country care program available if a patient cannot obtain an esssential medical treatment they need here in Canada. They've rejected every Canadian EDSer who has applied. 

For years the ILC foundation fought for EDS clinics to be opened and equipped with a team of specialists to cover the various complications; a cardiologist, immunologist, internal medicine, gastroenterelogist, hematologist, neurologist and, of course, an orthopedic surgeon and a neurosurgeon. So finally, they funded one clinic. One.... and that clinic has a years long waitlist and can only take people from Ontario. No other province has access. Not only that but they lost the one neurosurgeon they had trained and ready; he killed his wife and went to jail for it in 2017. They promised to replace him ever since, but have done nothing to do so, for years now. It's beyond unethical to leave us to rot the way Canada does... and there really needs to be more outrage about this matter...because the fact of the matter is, well, it is completely outrageous.

Yes 2016 they, after years of non profit organizations and patients insisting, allowed one neurosurgeon to be trained to do the surgeries... and when that neurosurgeon, after only performing a small handful of surgeries, unexpectedly killed his wife and went to jail, they promised to train not one but two neurosurgeons this time (which should have been the case from the beginning, in case something were to happen with one.) However, they have failed to bring this to fruition ever since. 

To this day we do not have an EDS-related neurospinal complications neurosurgeon... and we only have ONE clinic, ONLY available to Ontarians. It's a joke. The 1 in 15 EDS patients (including myself) develop excruciating and debilitating instability in their necks and even compression or herniation of their brainstems are, like I said, here in Canada, we are simply left to rot if they cannot come up with the hundreds of thousands of dollars for surgery abroad. Myself included in this.. and like I said this has overtaken my life and for the most part held me hostage away from the more active music career that I would love to be having. So because my dreams have been broken in this way, I am defiantly trying to reformulate them, and intertwine the music, modeling and whatnot which I can manage to do with activism - it's 'artivism.' I consider Dreamer Queen a musical and fashion loving 'artivist.'

But it's hard, and I am fighting to somehow gain financial freedom so that I can own home (even just a 2 bedroom+den cabin or trailor will do!) and access care privately. See, various EDS complications that don't have adequate available treatment here in Canada either. There are a lot of odd but nasty internal medicine issues like dysautonomia, serious GI system dysfunction, mast cell activation syndrome, hidden chronic infections and other odd but debilitating autoimmune-like immunological conditions. To boot, I believe that these conditions being left without proper treatment and/or management plays a big role in developing ligament damage that leads to spinal instability issues. It's crucial to treat and manage internal EDS issues far more than we do. I truly believe that if we did, we wouldn't end up stuck with such a colossal conundrum as having to live with an unstable neck as well as various issues which may be, and often are, superficially treated (half ass that is) by drugs like beta blockers, h1/h2 histamine blockers, steroids, and of course various painkillers - all of which I am on. I live in silent agony, as most of my fellow Ehlers-Danlos patients do, and I need to break this silence and make people aware. It's very important and is needed for the change we need to happen. 

My neck often produces pain so intensely bad that I would compare it to having a nasty, persistent toothache in the back of my head. Also - thanks to EDS - I've had more than my fair share of those, too...not to mention bad dept unto credit ruin thanks to dental bills. For years I have been saying that I strongly feel dental needs are medical needs and should be included in our medical plan as opposed to paid for privately - especially if a person has a medical condition that is known to cause dental problems. I was damaged due to delays and limited finances forcing limited options, in my dental treatments; my immune system was especially impacted. I reacted to silver fillings' mercury content, root canals didn't deal and became infected because EDSers are prone to that and I couldn't afford to get crowns on them as I needed to (and I would grind on them from stress in the night, which was terrible for them of course.) It was bad, and eventually resulted in me losing most of my molars and having to get a (very nicely designed however) set of Ivoclar acryclic partial dentures for both my top and bottom teeth. I dream of being able to go to Mexicali and getting permanently implanted crowns and bridges one day, but anyway...

As a result of the pain level I am in, I feel forced to take not one, not two, not even three but four types of pain medicines - including opioids - to not only not go completely mad and perpetually wanting to un-alive myself, but to maintain the ability to function in life independently, (though oftentimes at no more than base level.) I have to push myself all the time, just to function, really. Therefore, although my doctors' hands are tied in many respects, he does agree to prescribe me the pain meds out of compassion. He knows I have basically been left without a choice, in spite of the fact that these pain medicines (celebrex which is an NSAID, acetaminophen,  gabapentin and last but the most key, methadone) are gradually killing me, too. This does weigh on my mind a lot, and it's why I frequently try to find joy, even in the little things. 

Sometimes, Canadian EDS patients find success with GoFundMe, but oftentimes we don't.. and the lack of awareness as to how brutal the problem really is factors into that. I am taking another crack at it, though this time I am raising from a different angle than I had before as I have become wise about what is best and how I want to fight for my life. Although I try to find joys in things, overall when it comes to the bigger picture, my life is unsustainable and I am struggling with finances that are way too low. 

There are few things more heartbreaking than having to live with, and gradually dying of, very painful and difficult medical problems that have to remain untreated, even though they can be treated, thanks to money. The psychological impact of having to endure this kind of situation is powerful, and I tell ya, people who say 'money isn't everything' and 'you don't need money to be happy' are most definitely making that declaration from a place of able-bodied privilege. Millions upon millions of health-challenged people suffer and die every year due to not having the money required to pay for their medical treatment/s. Healthcare remains considered a business as opposed to a human right.

Even in the face of this countless people all over the world try to insist that healthcare is not a human right, and that it should be privately paid for by the sufferer. In my humble opinion, there isn't a single element of fairness to this philosophy; for one, health problems are often not at all the fault of the one suffering from them, and furthermore, untreated health problems cause unnecessary disabilities including those severe enough to prevent a person from working and earning money ie contributing to the economy. With better healthcare and better accessibility many more chronically ill and/or disabled people could indeed be working and even pursuing a career that they love. It's a massive catch-22, not being able to work, to earn enough money to pay for care that would allow you to earn enough money...and to boot often being treated in a degrading manner - like you're 'unworthy' because of this. Lastly this causes government welfare systems to be unnecessarily taxed with people's living expenses, which they make very clear are burdensome by 'providing' disabled and ill people with appallingly low amounts to try and live off of - which is worse than ever for us since the recession has upped grocery prices so terribly. 

Imagine how much better the state of humanity would be if a lot more people were able to work and earn their own money, at least part time (while being subsidized, too) and even more hopefully working at things feel passionate about. A lot less people would have to rely on only disability funds to live, and perhaps more money could go into healthcare itself, whilst keeping up all these improvements. Just imagine. If we considered adequate chronic healthcare (and I emphasize the word adequate, since 'free' socialized healthcare systems often function at base level and are far better designed to treat acute rather than chronic health problems), as well as better modification systems in various jobs to make them more accessible to the non-able-bodied and the physically limited, as part of essential human rights. I think then we'd have a far better world close to being free of ableism. 

Ableism is practically born from the idea that if you can't work at earning your own finances you are inadequate as a human being. If you can't contribute to the economy you are "unworthy" and that message is so incredibly disempowering for those directly affected by it. Yes, it's confidence wounding, pride-stripping, and ultimately soul-crushing. In so many cases, it doesn't need to be this way, if better and more innovative job modifications, as well as a better level of healthcare of course, and one intended to much better manage chronic health concerns, existed. If this was the way, we would not equate ones' physical health status - coupled with their level of ability to afford proper healthcare, necessary disability-modifying equipment (such as mobility aides) and treatment of health issues, with their worth. We would simply see adequate healthcare as a staple thing, like we do food and water, and the need for modifications to help a person participate in work and life - such as mobility aides, medicines, supplements, reduced number of work hours via things like shorter or less frequent shifts, as merely necessary differences rather than burdensome and to be "ashamed"of.

However, and sadly, this is currently not the world we live in whatsoever. The widespread message is that if you can't afford treatments and modifications to accommodate your health challenges and/or disabilities, then you must not deserve it to be treated. You must deserve to have to continue living as you do, suffering as you do... because you are less than for having illnesses and/or disabilities, rather than simply happening to have them. The added psychological burden of living with untreated health problems is, thanks to this, massive. Not only do you have to live with the pain of the health problems themselves, but the pain of apparently not being 'good enough' to receive treatment and thus adequate-enough alleviation of your pain and suffering, and to add the cherry on top, for many of us, young people especially have to deal with 'faker' accusations. It's all enough to break ones' heart and wound ones' soul. It really is...and not letting it do so, as much as that is necessary in todays' world, is much easier said than done. The ability to afford dealing with health problems and living humanely with disabilities often depends on the sufferers' family's income - since the sufferer is, in a world hugely lacking in disability/illness accessible employment, often unable to earn the money needed to treat their illnesses/disabilities themselves. This leaves disabled and ill folks with unreliable, dysfunctional, low income, and even toxic family members in a truly terrible position. Then they have to rely on the government for help...and again all this is degrading. The processes make it that way.

Having the obligation to meet expenses of needs often falls on someone other than the sufferer themselves - and its incredibly disempowering. It can cause serious familial relationship strain in the form of chronic guilt, resentment, caregiver burnout and sometimes even flat out abandonment... all of which further cripples the self esteem of a chronic illness/disability sufferer. If ones' family is not able to meet the financial requirements it takes to alleviate their family members suffering and increase their accessibility to life, the psychological message is that the person is not important or deserving enough, which is a very sad thing to have happen but which is a devastatingly common phenomenon that can and does destroy families. This is a notoriously common tragedy in families with EDS present. 

In fact, since EDS has been such an orphaned disease (a disease for in which finding proper validation, treatment and resources for is scarce and difficult) it really gets the brunt of tragedy when it comes to pretty much all of what I've mentioned above. The serious and frankly appalling problems EDS has with being properly validated and diagnosed in the medical communities, which then sets a terrible example socially - including within families. This makes the issue is insultingly heavy. There are few things worse than not only having to live with the pain and debility of a persistent chronic illness but having to do so with a massive lack of love, understanding and support amid it. It's a nightmare that breaks many of us down into things like MAiD... and does this not sound totally inhumane? If so, where is the outrage? If you think all this is incredibly inhumane and flat out unethical, than be a person who speaks out. Help do something about it 

If only healthcare could be designed to strengthen economy by way of being adequately delivered to those who need it - with equal opportunity - regardless of familial income and social status, to the point that scores of people who would otherwise not be able to work are in fact able to, wouldn't that be amazing? The industry that would lose out, at least initially, would be big pharma... but big pharma is a very powerful industry hence why they are able to so powerfully protect their profits and shield from losses. However, if only big pharma itself would make a big shift in the direction of being more integrative (including more natural, less harmful measures of therapy and only including pharmaceutical drugs when and where absolutely needed) and include supplementation - and things like nutraceauticals (which I use daily but have to pay out of pocket for) they could continue to reap profits all the while preserving people's health on a level deep enough to optimize their abilities to work and follow their dreams. It'd be a win-win for everyone. 

Sadly, however, the wellness and the pharmaceutical industries are very separate and even at odds as opposed to working together and for each other, and this is another major driver for the inadequacy and inequality of healthcare overall. That subject is a separate topic of it's own so I will not elaborate too much other than to say that this is especially so when it comes to chronic illness, because those with chronic illness tend to respond a lot more positively to integrative care and more negatively to care which is exclusively pharmaceutical. The latter puts us on a track to an early grave; I say this as it's a track I am sadly on, myself. Even though that is still invisible (because I actually put a lot of effort into my appearance via self care, too... but it really fools people, and the truth is, I am much sicker than I look.)

Well, I am sure that most pro capitalist individuals may read me as being nothing but an unrealistic idealist, a dreamer, because such a thing as delivering an equal quality of healthcare to all, and eradicating societal ableism, just isn't possible. Well I do admit, I am quite the dreamer - hence my artist name - and, I am the first one to admit this. However, I still believe that equality in healthcare, and near-eradicating ableism - are in fact things that are possible to accomplish...especially if those who can genuinely afford to pay for it still do, like if it were being offered on a sliding scale basis. People, especially pro capitalists, would likely feel that this is unfair... but the goal would not be as much about discouraging people from working than it would be actually encouraging it albeit within ones' physical limitations... but I think I will have to wrap that topic up right here for now because it too is a topic which likely needs it's own blog...or maybe even book. Haha.

The topic in this particular blog is simply meant to iterate something in our society which is unethical and flat out inhumane; healthcare inequality, and to emphasize that Ehlers-Danlos Syndrome is a disease that gets the brunt of this inequality..as many chronic and rare - and also invisible - illnesses do. The rarer they're considered to be, the worse access to care is... which if you think about it is absurdly unethical... because the reality if that sick is sick, pain is pain, and suffering is suffering...and it really shouldn't matter how common or uncommon a health ailment is. But alas, it does, because once again healthcare is prioritized as a business and not a human right.. and as long as this continues people with less common medical conditions will often suffer the most. 

Healthcare is unethically treated like a 'supply and demand' business. Imagine how silly it would sound if a person from a less known country, say French Guiyana or something, showed up at an emergency room for treatment and were turned away because there 'aren't many people from that country' who come here. Well, this is how we treat less common disease, and at the end of the day, this is grossly unethical because sick is sick, and suffering is suffering. 

This tragically endemic inequality in healthcare has a massive impact on society by way of perpetuating ableist ideology and destroying the hearts and souls of fellow human beings whose only 'wrong-doing' to have 'caused' it is something that is all-too-often no fault of their own; the status of their health. The beastly condition that I suffer from, Ehlers-Danlos syndrome, gets the brunt of all this almost to a point where it is, at this current time in history, inevitably causing PTSD as well as unnecessary physical damage due to huge delays in recognizing, validating and thus treating it. 

This blog is not as much about the nature of EDS itself and what it does, than it is about that. As long as our healthcare systems remain as unequal as they are, health conditions like EDS will continue to ruin lives by way of immense suffering and tragedy physically, as well as emotionally by way of receiving the absolute brunt of ableism-based attitudes and poor social treatment... simply because EDS' affects are, in spite of being very painful and debilitating, not of the 'more typical' variety .. We're taught to address, believe, validate and understand more common illnesses instead of the notion that sick is sick, and suffering is suffering, whether it be of a more unusual variety or a more common variety. 

It's all so maddening, and there seems to be little to no light at the end of the tunnel here... but like one of my favorite memes says 'don't wait for light at the end of the tunnel to appear, light a match yourself.' I'll conclude by saying that while other forms of social justice seem to receive a lot of attention and publicity, I don't think ableism is one of them... at least not in the right ways. We need balance in the form of education and understanding - I mean where we use labeling as tools to develop further understanding about how to treat and approach something in the best manner, rather than as mere licenses for an unhealthy level of victimhood. If we viewed things in a more balanced, sensible way it could be the first step towards a paradigm shift that could lead to true equality in healthcare. True equality in healthcare would not only be from the financial side of things, but from the social side where we would be able to recognize and validate all forms of health challenges, whether they be visible or not so visible, common or not so common. Only then, with such equality, would people with EDS - an uncommon and not by any means obviously visible disease - not have to suffer the absolute brunt of the world's current endemic healthcare inequality and ableism.