I recently asked a disabled friend of mine, how can LWD actually help? What does your community need? Her answer was swift and sure: RESEARCH!!
I must admit, I was a bit surprised. Not street demos? Not catchier hashtags or logos? Not stacks of money and other material resources? Well yes, we need all of those things, but mostly we need research — research we can go to court with! I’ve been scratching my head ever since, wondering how a little group of people with no money and frankly not that much energy to spare could begin to satisfy a demand for “research”.
Then the Minister of Health dropped a hint in a letter he wrote to the committee studying legal safeguards needed when non-dying people with mental health issues start qualifying for MAID in March 2023. The committee concluded that they don’t need any special safeguards and the minister of health agreed. However, they too will need “research” and monies had been earmarked for that research in Budget 2021. My ears perked up. Can disabled people and their organizations have some of that research money, I wondered? So I wrote to him and asked. I have yet to hear back.
And the problem remains: Ipsos-Reid we’re not! But we do have allies in academic places who, given time and funding, are well-equipped to conduct quality research projects. So I copied a list of them on our letter to the Minister of Health, in hopes that they might sniff out an opportunity and make a bid for some of that funding, on the off chance that it hasn’t all been earmarked for propaganda already. Some of their ideas might not fit the standard Ministry of Health criteria, but would nevertheless give the community of people with disabilities and their allies information that could be very helpful and illuminating. Hopefully some of them will be invited to work up some proposals.
[One great idea of mine, involving ACES and SDH scores, I will save for my next post. (That’s Adverse Childhood Experiences, and Social Determinants of Health if you want to look them up in advance!).]
Meanwhile there are many, many other types of research project that could and should be undertaken — some obvious, some less so. For example, who will compile lists of safe hospices, hospitals and other facilities that will not hasten anyone’s death? That is, if such places still exist and are allowed to continue providing MAID-free services. Who will collect stories of people with disabilities who have been deprived of dignified support and/or been informed that MAID might be a better solution than adequate grocery money? Who will task themselves with noticing and documenting problematic patterns of MAID choice amongst particular populations?
Or who will conduct inquiries around language, its use and abuse, in the decades-long assisted suicide conversation? How does the euphemistic “MAID” rather than calling it what it actually is, “DAS – Doctor Assisted Suicide — how does that help to make the unthinkable thinkable? There are many, many examples of language manipulation for researchers to choose among.
Who will track problematic levels of representation of disabled characters, or involvement of disabled artists in movies, stage productions, visual arts and television.
Who will critique problematic story lines in popular culture — for example, do you ever hesitate to watch something that has a disabled character in case it turns out at the end they’re going to kill themselves or let themselves be killed?
Or back in the real world, who will find out what’s going on behind the closed doors of offices — doctors, lawyers or other professionals? Or who’s going to monitor the speech of front-line cafeteria personnel, food bank workers, crisis line workers, social workers, hospital cleaners, or who knows who — who take it upon themselves to “educate” people with disabilities about an “opportunity” or even a duty to die, to save their families, the government, insurance companies or other parties money, aggravation or stress. That could never happen? Ah, but it already has. A worker at Veteran’s Affairs recommending MAID to a veteran with PTSD is the best-known example — one that hit the news and garnered public interest, attention and concern, even a quick inquiry — but there are bound to be many others. But people who lack the credibility of military service or a large and well-funded bureaucracy may not be so lucky.
Framing any of these studies as court-worthy research might be a difficult stretch. But surely it’s worth a try. Remember, lives are at stake!
You probably have thoughts and ideas about what research efforts deserve to be pursued and well-funded. We would be pleased to hear from you!
Oh Pat, I would love to be involved in the research studies. My BA is sociology so that would give me an academic background for the research. My MA is environmental studies. And I have had an invisible disability my entire life. This is a brilliant initiative. How exciting. Who can I connect with? Time to talk!!
That’s great, Mimi! We will talk, for sure. Do the captions in Zoom work for you? I’m free most afternoons and can initiate a call whenever you say, pretty much.
Me again. I’m starting a “strategic planning” process with my Board members this evening. We will try to figure a few things out, then I’ll be ready to chat with you. Do you have a specific project in mind? What do you want to find out about? Catherine is presenting at the final Committee hearing tomorrow at 8:30 am Eastern. If you miss it, I will be posting it on the new web page called Testimony to Government.
I look forward to connecting! – P