Hello, Friends!
I hope you’re doing well and enjoying summer so far! I have another message waiting in the wings for you (coming soon!) but I had to get this off my chest first.
Please take 12 minutes to watch / read the transcript of this video I recorded about the DOJ’s Olmstead Memo. We are at a very scary turning point with Disability Rights in this country and we all need to pay attention.
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VIDEO TRANSCRIPT:
Hi Everybody!
I am making this a video because I am upset about the Olmstead Memo, but I don’t feel like writing a whole essay about it because it just makes me so mad that we’re still having to talk about why we should integrate disabled people into society.
So I just want to let you know that before the ‘70s and ‘80s (and into the ‘70s and ‘80s), the norm for people with disabilities - and especially people with mental disabilities - was to institutionalize them. You had to fight really hard to keep your kid at home with you.
And then even in that case, there wasn’t support like personal care attendants and job coaches and all that stuff. There just wasn’t a lot of support for people with disabilities.
That started changing, you know, right around the ‘70s, ‘80s... When I was born, in 1984. You know, it was like this perfect little window where people were getting out of institutions and into the community, and now we’re trying to go backwards.
The Department of Justice memo doesn’t actually change anything yet, but it signals that this is the Administration’s view, and it probably will have real repercussions if we don’t really push back on it.
The first thing that you need to know is this is not happening in a vacuum. There are cuts to Medicaid, and Donald Trump himself said in April that we can’t afford things like Medicaid and Medicare and childcare.
So these cuts to Medicaid are making it harder and harder for places that already do work with mentally disabled people to live in their community because they’re cutting back services.
Also, the other part of the vacuum that we can’t ignore is that we are currently incarcerating immigrants in this country. And I don’t want to go too much on a tangent, but those detention centers are being run by private equity firms like Vanguard and places that are doing this for money. And so I have done some research on some of these companies that are operating detention centers, and I read one of their quarterly reports, and it was like: “Things are looking great. We’re gonna grow, we’re gonna grow, we’re gonna make more money.”
And so this is a profitable venture to keep people in housing facilities en masse, and it’s a really, really sick form of capitalism that obviously, I hope I don’t have to explain to you why that’s bad, but it is bad.
And then the other part of the vacuum is that no person should, based on who they are born as, be incarcerated. Putting someone in an institution against their will, whether or not it’s a medical institution or an immigration institution or a jail, is incarceration. So, let’s just start with those baseline facts that none of this is happening in a vacuum.
I read through the memo to the best of my ability. I’m not a lawyer. I’m gonna link to some places that you can check out.
A big thing that stood out to me is the memo said: "We can’t base our current decisions on unfortunate incidences in the past." And the reality is, is that this exact same kind of institutionalization that’s being discussed through this DOJ memo is the the same as Willowbrook. Willowbrook, I wrote about it in my book because it was such an important piece of disability history. It was an institution that was built to house people with intellectual disabilities and it got overcrowded and completely mismanaged and people died in mass. They had medical tests done done on them without their consent. Like, it was a horrific, horrific thing.
And so we absolutely CAN base our future decisions on mistakes of the past. I don’t think any of us are thinking — I mean, we don’t wanna try slavery again and say, “This time we’re gonna do it better." We’re just not gonna go back!
And that’s what we have to think of when we talk about Olmsted.
RFK, the first one, R.F.K. Jr.’s Dad, visited Willowbrook and called it a snake pit.
And we all know right now, watching what’s happening with immigration, that the Dilley Detention Center is not an ethically run place on any level. There’s not healthy food and there’s not good access to medical care. We don’t do detention in a mass scale well. And we shouldn’t be thinking that this is a solution to care for disabled people.
The other thing that I read a lot of times in this memo was, "There’s many reasons why we would need to potentially put people in institutions. One of them would be lack of resources." I thought this was the sneakiest part of the memo, is to cite limited resources at the same time that they’re slashing Medicaid.
We need to create a future that we want to see, and the truth is, is that this is not really about medical care. It’s about slashing benefits down to the bone and then saying, “Oh, I’m sorry, we don’t have the services in the community for you, so here’s your other option... It’s called living in an institution.” And so that is a sneaky and dishonorable argument in the Olmstead Memo.
The other important thing to note is the discrimination they spoke about in the memo. They were trying to prove that it wasn’t discrimination to have some people in an institution (even if they could otherwise be living in their community with support), and they were comparing it to different groups of people with intellectual disabilities.
So they were saying, "Well, just because one group of people with intellectual disabilities is in an institution, it doesn’t mean that it’s necessarily discrimination because some other intellectually disabled people are living in the community."
But I think it’s the wrong comparison.
What I think they should be weighing it against is this: Are we asking the rest of the general population of citizens to be living against their will in an institution when they could be out in their community with with the supports that they need?
You know, the thing that we can’t forget - and we just have to keep reminding people - is that people with developmental disabilities are citizens of the United States.
Putting them in a place that’s more restrictive than they need to be simply because we don’t wanna pay for it or it’s complicated is not respecting their value as citizens. We wouldn’t do it with other groups. The scary part is, is if we start justifying people with intellectual disabilities being segregated, that logic can apply to other groups.
Like what about cancer patients? "It’s too hard to have them be in their home and have nurses come to their house. Everybody who has cancer has to go live in an institution." Or, moms who and dads who are single parents? “Oh, it’s too hard to provide childcare. Everybody who is a single parent has to go live in an institution.”
It sounds far-fetched, but the biggest comparison that I can see is senior citizens. If we decide it’s too hard to provide any services to senior citizens outside of an institution, then everybody just has to go to an institution whether or not they really need to... Which is the key.
Whether or not it’s possible for them to live at home, are we going to say the only services we will cover are those that put you in an institution? And as I said, Trump has already hinted that "we cannot possibly pay for Medicaid or Medicare or childcare because we’re fighting wars", so the states have to do the lifting in terms of finances.
Now I’m gonna be real: Yes, it’s obviously a complicated issue and it comes with challenges to make sure that disabled people can thrive in their communities... But it’s the right thing to do.
You know, I performed with Kevin Kling at a place called Interact Theatre in the Twin Cities... It’s an arts program for people with developmental disabilities.
It was one of the most vibrant and creative and caring and joyful places. Everyone there was creating theater that was going to be viewed by the wider public. They had a community, they were integrated in other ways in their community. And 50 years ago, almost all of those people would have been siloed away in an institution by default because that is how our country used to operate and that is how they want to go back.
I think that that is a shame. Not just a waste of human potential, but also really depleting our society of art and enrichment and just compassion. We all need support. You might not think that you do, but if you use roads, if you use schools, if you have the desire for clean water, food regulations, all of this comes from our government.
None of us are void of getting support. Big businesses get tax breaks and incentives to build and government contracts, so disabled people should and must - in an equitable society - receive the support that they need to thrive.
I’m really, really getting tired of having to call my legislator, Pete Stauber, a Republican, telling him that disabled people shouldn’t have to live in an institution. That disabled people should have access to medical care. That disabled people should be treated with dignity and respect.
And the truth is, every time there’s a budget issue, real or contrived, disabled people are the first people on the chopping block, and it’s getting really old.
Next month is July, Disability Pride Month. Where we celebrate the passing of the ADA and the progress that we have made and the progress that we still have to make as a group of really vibrant and valuable human citizens. And it’s just getting tiring that we are always stuck at advocating for our right to exist.
We need to get beyond that and say that we are trying to create a world where people can thrive. What kind of world are we building if we say, “You could live in the community with support, but instead we’re gonna force you to live in this hospital setting without a choice?” That is what the Olmsted memo is about.
That is what they wanna go back to, and it’s really wrong. I urge you to call your representatives and also to stay alert because right now, they just issued a memo... Nothing theoretically has changed yet, but it is a big, big indicator that the goal of this Administration is to put people - first - with developmental and intellectual disabilities and mental illness into institutions.
But I really don’t believe that it will stop there based on their approach to immigration and crime and everything else. Institutionalizing is a viable option for this Administration that makes them money, and it is not an okay direction for our country to go. So I urge you to stay informed.
Thank you for watching this long video, but I just need to get it out of my system. It’s really, really been weighing on me, and I hope that together we can keep these kinds of rulings in the theoretical memo form and not applied by law. So thanks for listening.TO END ON A HAPPIER NOTE:
Thank you for watching / reading… I know you support me and my music, but it’s my hope that you also support the wider disability community. What affects some of us will ultimately affect us all.
And to end on a happier note, here’s the full video of That Show with That Midwestern Mom! I was the debut musical guest on her new, live-audience talk show, an I had a blast talking with her and performing. Watch it here:
UPDATED WEBSITE! SEE MY UPCOMING EVENTS + BUY MY BOOK:
Take a peek at my newly-renovated WEBSITE! I spent about 12 hours (7pm-7am, as per usual when I get hooked on a project) a few weeks ago revamping my website after my older brother and I almost died laughing looking at the how hilariously terrible my website was in mobile view…. My homepage was basically just a close-up of my eyeball! 🤣 The website was also just a nightmare to navigate… I am no professional web designer, but at least this updated version isn’t atrocious!
Thanks for taking the time to read this, Friends. If you found it informative and/or motivating, please share it with a friend. And, as always, if you want to support my creative work in a financial way, you can become a Paid Subsriber any time!
Thanks for your support, and sending love!
Truly,
Gaelynn Lea
