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HomeMy WebLinkAbout08-24-2026 Correspondence - Disability Rights Montana - Growth Rings - What If We Assumed Disabled People Belong Here_From:Disability Rights Montana - Growth Rings To:Bozeman Public Comment Subject:[EXTERNAL]What If We Assumed Disabled People Belong Here? Date:Monday, August 24, 2026 9:39:32 AM CAUTION: This email originated from outside of the organization. Do not click links or open attachments unless you recognize the sender and know the content is safe. Forwarded this email? Subscribe here for more Every paid subscription supports Disability Rights Montana’s work across Montana. Federal funding is nowhere near sufficient to meet the advocacy and culture change work that is needed. You can help fund the future you want to see! What If We Assumed Disabled PeopleBelong Here? A disability lawyer reflects on the single question hiding beneath twenty-five years of fights about law and policy. READ IN APP It’s late August, 2026. 25 years ago, a couple weeks before 9/11/2001, I started law school. My goal - become a disability rights lawyer. Had I ever met a lawyer before? No. Did I even know if “disability lawyer” was an actual type of lawyer? Nope. Did I have any idea how a dyslexic kid who barely graduated high school and whose parents didn’t even go to college, was going to fare in the highly competitive, intellectually rigorous, word-based setting of law school? Not a clue. Somehow, here I am. So I guess all that stuff got sorted out. This article isn’t about my actual journey, it is more of a reflection on a theme that keeps coming up. I thought it would be helpful to share some thoughts on the most frustrating AUG 24 thing I have encountered and keep encountering day after day, year after year. That frustrating thing is that when you work to protect and advance disability rights, you spend a surprising amount of time arguing about things that should not be up for debate. I’ve spent a lot of time working in disability rights, legal advocacy, public policy, and systems transformation. Over the years, I have sat in conference rooms, courtrooms, legislative hearings, agency offices, and community meetings where people debated questions that most Americans would find shocking if they heard them out loud. Questions like: Should this child be allowed to grow up? Should this person be considered “person” under the Constitution? Should this patient be treated with dignity? I mean is dignity even a thing for someone with “significant” disabilities? Should this tween be educated alongside other neighborhood kids? Should this adult be allowed to make choices that involve regular everyday risk? Should this sick person be denied life saving medical treatment? Should this other sick person be locked up to get treatment they don’t want? Should this patient get treatment to get them healthy enough to go home? Should this person who has gotten healthy enough to go home be allowed to go home? These have all literally been posed to me by highly educated professionals in positions of power while I was advocating for disabled people. These don’t seem like hard questions to me. They don’t even really feel like open questions. They feel like questions settled generations ago, perhaps millennia ago. But when belonging is not the default assumption, these simple questions somehow become complicated and they come back again and again (perhaps because the professionals don’t like the answers they keep getting). While these questions would never be asked in almost any situation that doesn’t involve disability, when disability is introduced into the scenario, unaskable questions are asked. And they are asked over and over again, until the powerful people pushing the issue get the answers they are looking for. Over the years, I’ve come to understand that many disability policy disputes are really arguments about a single underlying moral, not policy, question: Do disabled people belong in the community? Or is disability something people without disabilities should manage, contain, separate, control, solve, or eradicate? Are disabled people only allowed if they conform, comply, and submit to the power of non-disabled people? Or can they exist alongside other people, even non-disabled people, as they are without apology, compromise, or assimilation? The Debate Beneath Every Debate We don’t always ask the question that directly. Instead, we discuss policies and laws policy and share our suggestions and refinements on pieces of paper. The question of belonging is avoided by hiding it behind abstractions that are divorced from the realities of the daily lives of people with disabilities like: Budgets; Programs; Regulations; Waivers; Licensing standards; Medicaid; Guardianship; Mental health systems; “Special” education;… But under all those discussions is usually the same fundamental disagreement: Some people begin with the assumption that disabled people already belong while others begin with the assumption that belonging must be earned. Everything else is just window dressing. Years ago, I found myself involved in discussions about proposals to medically suppress the physical growth and sexual development of children with significant physical support needs and intellectual disabilities. Supporters argued limiting the size of people with disabilities to that of a child for their entire lives could make caregiving easier and help families avoid institutionalization. The pharmacological and surgical interventions could produce what they called “pillow angels” - people with disabilities the size of children without breasts or mensuration. One bioethicist who strongly supported the idea, actually argued that so long as the procedures did not create “freakish” results like a disabled adult so small they could fit in your shirt pocket, it would be fine to limit a person’s size without their consent in order to better meet their needs. Think about that for a moment. Most people reading this newsletter probably had no idea such a debate ever occurred. That’s part of my point. This happened, in your lifetime. Not 100 years ago at the height of the time the United State openly furthered a eugenic approach to disability. It happened this century. And with all our modern technology and enlightened social progress, rather than The Growth Attenuation Debate (or The ArgumentFor and Against “Pillow Angels”) demanding that society better support families caring for disabled children, and eventually disabled adults, at home, the conversation and copious amounts of medical resources shifted toward figuring out how we could instead permanently alter disabled people to fit the limitations of the support system we have designed and perpetuate. I argue that the problem that needed to be solved was never the child. The problem was the lack of services. The problem was the lack of support. The problem was the failure of public systems to meet families where they were. The problem was our decision as voters, policy makers, budget writers, administrators, and advocates. Yet somehow the person with the disability became an object to be modified. An object the powerful could force to change to their will. The disabled children would pay the price for our investment in a system that could imagine changing them more easily than it could imagine supporting them. This happens more often than most people realize. When belonging is not the default, when we put the shared humanity of disabled people up for debate, people with disabilities are expected to conform to the expectations of the system instead of demanding that systems adapt to their existence as fully equal human beings. I’ve spent years working on behavioral health and mental health issues. Few areas produce more difficult conversations. I’ve encountered policymakers who sincerely believed that more involuntary treatment, more confinement, and more coercion were the answer. Their intentions were often good. The systems they proposed were not. The reality is that a person can be both vulnerable and entitled to freedom. A person can need support without surrendering dignity. A person can experience mental illness and still deserve meaningful due process and connection to their community. Where resources are inadequate, forced treatment can become a substitute for “Treatment for Their Own Good” building the community supports people actually need. It is far easier to pretend adequate mental health services exist and then blame sick people for not using them to get better than it is to look in the mirror and admit you chose not to invest in the services people need and that is why they are sick today. And it’s much cheaper to remove someone’s choices than it is to create genuine options. But easy and cheap are not the same thing as right, they rarely are. Again, I will challenge us to admit that the question was never really about getting people the treatment they need. The question was whether people experiencing mental illness still belonged in the community while they were struggling, or whether separation seemed easier than building the supports people needed to get healthy while remaining connected to family, community, and opportunity. The COVID-19 pandemic exposed another side of this debate. In some circumstances, disabled people found themselves fighting for access to scarce medical treatment because assumptions had been made about the value or quality of their lives. Disability advocates across the country rallied in the early days of the pandemic to head off an unspeakable, unimaginable outcome that was barreling towards the disability community. States and hospital systems were implementing ruthlessly utilitarian rationing plans that allocated scarce life saving ventilators, hospital beds, and medical staff availability based on disability stereotypes instead of medical need. Think about the contradiction. In the context of mental health described above, disabled people are told they must get treatment because non-disabled people said so. In the pandemic, disabled people were told they cannot get treatment because non-disabled people said so. The questions the same: How much value does society place on disabled lives? The answer we often receive is: The Pandemic Taught Us SomethingUncomfortable Disabled lives are not valuable enough to be granted the same liberty and freedom non-disabled people have, this society is free to do to them what it wants in order to maximize societal goals. This brings me to another lessons I’ve learned in the past quarter century: institutionalization is rarely about buildings. It’s about imagination. People often assume institutions are necessary because they cannot imagine another solution. But, I’ve spent much of my career poking holes in that assumption. And in doing so have helped people leave institutions. I’ve worked with students returning from segregated educational settings to their neighborhood schools. I’ve advocated for services that enable people to live at home rather than in facilities. I’ve challenged systems that locked more people up than they could safely support, placing the people they claim to be helping in more dangerous and inhumane conditions than they were in before the “help” arrived. Every time someone says, “There is no alternative,” I become suspicious. Because I have spent too much of my life watching previously unimaginable alternatives succeed. People often imagine disability rights advocacy as filing lawsuits. And sometimes it is. But regardless of whether a lawsuit is involved, the real solutions come when everyone starts working together. Therefore, the sooner we get folks to work together, the sooner we get the solutions our community needs. Over the years, I’ve had the privilege of helping advocate for and then design major overhauls of multiple systems, including behavioral health and crisis- response systems that brought billions of dollars of new investment into services and transformed access to care for both youth and adults. None of those solutions started with the question: “How do we control people?” Institutions Are Often a Failure of Imagination What System Change Actually Looks Like They started with a different question: “What do people need to succeed in their communities?” That shift changes everything. Because when you conclude disabled people belong, your solutions look different. You invest in housing. You invest in schools. You invest in transportation. You invest in personal assistance services. You invest in behavioral health supports. You invest in families. You invest in relationships. You invest in opportunity. You stop trying to make people fit systems and start making systems fit people. People often frame disability policy as a choice between community and institutions. As you can see, I don’t think that’s quite right. The real choice is between belonging and exclusion. Institutions are simply one expression of exclusion. So are segregated schools. So are inaccessible workplaces. So are transportation systems people cannot use. So are housing shortages. So are attitudes that assume disabled people are burdens instead of assets. Belonging requires work. It requires creativity. It requires investment. It requires patience. It requires faith in one another. And after over two decades in this field, I’ve reached a simple conclusion: Every meaningful advancement I’ve seen has come from expanding belonging. The Real Choice Every setback I’ve seen has come from limiting it. The disability rights movement is sometimes accused of asking for too much. Too much accessibility. Too much autonomy. Too much inclusion. Too many services. Too many rights. I see it differently. For more than fifty years, disabled people have been asking society a remarkably modest question: What if we assumed disabled people belong here? Not someday. Not after treatment. Not after improvement. Not after proving our worth. Now. Most of the absurd debates I’ve encountered in my career disappear the moment we answer that question correctly. And perhaps that is the most important lesson of all. The opposite of institutionalization is not a community placement. The opposite of institutionalization is belonging. Let’s build belonging together, David A Final Thought David Carlson, J.D. Executive Director Disability Rights Montana Thanks for reading Growth Rings! This post is public so feel free to share it. Share Growth Rings is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber. Upgrade to paid You’re currently a free subscriber to Life Beyond Compliance. 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