r/disabled • u/Over_Ambition_3722 • 2d ago
Disability and MAID program.
If you have been disabled for a long time or are chronically online like I am, you've probably heard of the maid program(medical assistance in death ). Obviously this is still very new type of thing. And I don't even live anywhere close to where it's being enacted. I live in the Southeast United States. However, as I get older, I'm 21 now, I start to see the reasoning behind it more and more. I have spinal muscular atrophy type 2 and Between being in constant pain, low self-esteem and complete social/ romantic isolation, it starts to feel like you are already dead so why not just make it official. I've already tried to end my life three times and as I get older and I lose more strength it starts becoming less and less of a possibility which is a good thing I guess. Having something like the maid program would give me an opportunity to have a legal and less traumatic experience for my family and give me the autonomy over my body and what I want to do with my life. I see a lot of negative thoughts about this program which are completely valid, but has anyone else given it a thought on whether maybe it's a good idea or not?
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u/Jules4live 2d ago
aside from the bigger picture stuff its totally valid to want access to something like that when a person is truly ready to go. its tough though bc so much of the experience of disabled life is made a hardship by the exact system that offers death as the only alternative to the suffering they perpetuate.
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u/gnarlyknucks 2d ago
Think of this though: what if you had the same disabilities, but could get good pain control, found a way not to be socially isolated, and found someone to work with to develop self-esteem, would you still want not to be around anymore?
Is it about the condition itself or the supports you have, the needs not being met?
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u/aiyukiyuu 1d ago
The reality is that pain management (especially for younger individuals) is hard to get access to in the USA for some reason.
I know 4 people who killed themselves because of chronic illnesses and/or chronic pain. All very good and kind people 😢
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u/QueenZixi 2d ago
Any death with dignity program in the US still prohibits doctors prescribing these drugs to actively suicidal patients. SI/SA both count here.
I'm sorry you're feeling so isolated now. I understand what it's like to be in pain constantly and feeling isolated socially. If you don't already have one, find a good therapist to process your feelings with.
If your medical prognosis isn't terminal with death expected within 6 months, you will never qualify for MAID programs. That's one of the general requirements. (I've had 3 grandparents go this route)
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u/Jules4live 2d ago
in my mind this is a problem because in canada there is even less financial support to survive
disabled folks deserve support to live in community and access to treatments
in the us the regime is undermining funding for care in the home; they are funneling everyone into for profit “care homes” to extract more wealth before death in documentedly poorer outcomes in these centers. geocorp owns the ice facilities as well as rehab camps etc etc. they are criminalizing the homeless now etc
my point is its fascism. maid is fascistic in a softer way than the present us system. extract wealth from our bodies. we have a right to the very best care and support humanity can offer, in our homes
if we get there, and under that dynamic, i think access to suicide should also be an option. right now there isnt really a choice? ie in canada if you’re homeless they remove the portion that was supposed to go towards rent. (and is not enough for rent)
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u/Fluffy-Bluebird 2d ago
I believe everyone has the right to leave their bodies on their own terms. Death is not the ultimate failure - a lifetime of suffering is. Not all bodies are habitable.
I always tell doctors that you wouldn’t force someone to stay in a burning building. You either put the fire out or get them out.
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u/ADragonsSpirit 2d ago
I never heard of MAID before… but… I wouldn’t do it. I’m always here for you ok?
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u/leoreleh 2d ago
I see the slippery slope. I see people being pressured to end their lives because it’s cheaper long term or because they burden their families or communities.
I have a severe and extreme case of my genetic condition. I’m 28 and live with my parents bedridden for three years now. But I deserve happiness too even if it looks different. I’ve worked my ass off figuring out how to have a happy life with so much limitations and isolation, but I succeeded. I’m not happy all the time, but I average at least at content.
I’m not going to try to convince you to just think positively or even that you shouldn’t want that. I have no idea what your pain feels like or how isolation feels. What I can tell you is that things change all the time. You have no idea what miracles in science will happen. For example, I recently got an intrathecal pain pump and my pain has gotten so much more bearable. Maybe one day they’ll be able to make your life better too. You just need to decide if it’s worth the wait.
I do hope you can find ways to feel a sense of purpose and happiness in your life. Crafting helps me. Making beautiful things like quilts or crochet makes me feel productive even if it takes me 10000 times longer than able bodied people.
You aren’t alone. We are all here for you
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u/Sea-Beautiful-Throwa 2d ago
Most MAID programs require that the person have a terminal illness and less than 6 months to live.
They also will require psychological screening because they want to ensure the person is capable of making their own decisions. For example, someone with Dementia can’t get approved for MAID.
There are some states that do MAID in the US, I believe Canada does as well. I forget which country, but I did read about a young woman choosing MAID while struggling with mental illness.
I know some people state concerns that people may be temporarily suicidal, but I don’t think they understand how long the MAID process takes and the psychological evaluations involved.
I personally feel like MAID should be expanded past just terminal illness. Obviously I don’t support eugenics and I do believe that there should be thorough psych evaluations to ensure the patient isn’t being forced or coerced. But if someone has a chronic disability that has them suffering daily with no treatment or cure options available (or none that work), then I believe it should be the individuals choice if they want MAID or not.
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u/Top_Meeting_7420 2d ago
I agree with this completely that it should be extended. I wish there was no need for it to exist at all, and we could fix the problems wrong with the systems that could provide better quality care for people, but I don't see it happening in my lifetime (or rather, for the lifetime I'm going to have with my chronic illness). I was diagnosed at 11 with JRA, and I'm currently 44, and have continued having progression of RA and OA. I was caring for a resident in an Assisted Living Facility years ago, who was 63, and diagnosed with RA at 26. Her pain got so bad at night, that she would absolutely refuse to be toileted as her joints had locked up from not moving during sleep, and it was too painful to get up and be toileted. It eventually became too painful for her to even be turned in the night, and have her brief and pads changed. She accepted laying in her own urine for hours was better than going through all that pain. All of her dignity had been stripped. And I saw my future in her, and I wasn't even 25 years old yet, and considered that I may choose a more compassionate ending earlier than life has planned if I get to that point. I'm always fighting for change, and I'm always praying my heathen prayers that science will have a breakthrough somewhere for chronic pain, sooner than later.
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u/aiyukiyuu 1d ago edited 1d ago
I went through 4 suicides due to chronic illnesses and chronic pain. The first one was my uncle who acquired a debilitating work injury that left him with chronic pain in a wheelchair.
Everyone talked so much shit about him (Even my dad). I was one of the few that understood and saw him for who he was while he was still alive: My kind and gentle uncle that helped take care of me growing up.
He was the first one that taught me that you don’t know what’s someone is going through. And when enough is enough for them. Everyone deserves compassion, grace, dignity, and self-autonomy. I just wish programs were better to help people
So, whatever you decide, just know that I want you to be comfortable and grounded in your decision. 😢 It’s not an easy one to make. But, again I’m not in your body. So, only you know what you can handle.
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u/Sosokittyplays2 2d ago
I can understand why it exists but I think it's very immoral to have a system like that in place in a country where healthcare isn't free. I wouldn't be surprised if many people who have looked towards it only did so because they couldn't afford medical treatment.
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u/LittleReserve8767 2d ago
We have had one since Oregon in 1997, and another state may have one.
I learned about it from a book. One concern I have about a program is that people may be temporarily suicidal but may find they want to live later.
I have no problem with MAID when ethical checks and balances are in place, and the decision is made by a rational person (or they make their wishes known earlier).
If you live in the US, you may know it is looked down upon by some people who think it is a sin or by those who don't support bodily autonomy.
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u/Obvious-Explorer-195 2d ago
People that are temporarily suicidal: not really relevant given eligibility requires you’re within 6 months of death anyway.
As for people that look down on it, you’re actively dying if you’re approved. You don’t have to tell anyone how you die, except that it’s from your disease.
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u/LittleReserve8767 2d ago edited 2d ago
I am not telling people how to die if that is what you are assuming. Do you want people with mental disorders to die because they are in mental pain, and it will get better?
People can feel suicidal for 6 months or more and make it through, so that is relevant based on my past career. I am guessing you have never worked in a line of work where people are suicidal due to mental disorders that most probably will get somewhat better, and you are responsible for therapy to help them feel better again. MAID programs overseas have more open requirements than those in North America.
I don't agree with the people who look down on it. However, that is part of why it is not legal in other states. My point was that people's bodily autonomy is neglected.
I don't want to argue; that is my view as a former mental health professional, and you can't argue me out of it.
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u/whyihatepink 2d ago
I didn't think they were arguing, fwiw. Also I'm an active mental health professional with over a decade of experience, including multiple years working in emergency rooms and crisis centers helping suicidal people. I worked in Oregon. Those who were seeking MAID went through a completely different route that required extensive evaluation and the close involvement of a mental health specialist trained in this area. I specialize in disability in my private practice in Oregon, and I've worked with people who have sought MAID. I've seen MAID systems in the US up close, and I feel confident that there are a lot of checks and balances to ensure emotional and mental stability at the time of decision, and over the ensuing 6+ month process.
I'm not trying to argue you out of it either, you get to have your opinions and it's a deeply personal and nuanced topic. It's totally possible I'm wrong and my experience around MAID isn't typical. I just wanted to note the narrative of your statement doesn't align with my experience, as someone with shared credentials and up close experience with the systems involved.
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u/LittleReserve8767 1d ago
If it helps, when I am talking about suicidal ideation lasting for 6 months, it is not the type of person who has an active plan and a way to do it, who is highly motivated or intoxicated.
An example is someone who has passive suicidal ideation that may have it for six months: someone who has serious, disabling chronic pain and thinks about suicide but is able to think of a reason to go on to the next day and attends regular therapy online.
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u/dinosaur_vacume 2d ago
I’m Canadian, disabled, on ODSP, and living well below the poverty line. When I lost the ability to walk, I received eight Physio sessions after leaving the hospital and that was the end of my support. I can now walk short distances with AFO’s and a walker, like make it to the bathroom. It cost a lot and I consider myself extremely lucky.
I support MAID for competent adults making an informed choice because of serious illness, loss of quality of life, or end-of-life suffering. People deserve dignity and choice.
What I don’t support is people considering MAID because of poverty, lack of housing or anything else is fixable by fn money. People are in fact being presented with the option because of lack of funding. This is a real thing.
People should have the right to die with dignity, but first they should have the chance to live with dignity. Adequate SUSTAINED income, housing, healthcare, and support would change lives.
Doug Ford’s government spent $29 million on a jet, returned it, and taxpayers still got stuck with a $190,000 bill. The issue isn’t money, it’s priorities.
We aren’t burdens. We are wonderful people who have so much to contribute to the world. All we need is a chance. ✌️