Messages from our CEO: Kickin’ It with Kimberly
It’s essential to us that we keep you well-informed about current issues and barriers affecting people with disabilities. Our CEO, Kimberly Tissot, recognizes that you are at the heart of our efforts to promote disability rights, justice, and freedoms. Letters will be written to you, our key supporters, about the injustices we uncover and the solutions we can offer as a disability-led organization.
August 2026
Kickin’ It with Kimberly: Why “Disability Communities” Aren’t The Solution
Hey, friends—it’s time for another Kickin’ It with Kimberly.
This one may be controversial. So before you fire off an email or come for me in the comments, please hear me out (and maybe take a deep breath and a sip of coffee first).
Across the country, more communities are being developed specifically for disabled people. They may be called disability villages, intentional communities, supportive housing complexes, or “safe” communities.
Many of them are beautiful. They may include apartments, transportation, activities, employment opportunities, walking trails, and services all in one location. Families are understandably drawn to them because they worry about safety, support, and what will happen to their disabled loved ones when they are no longer here.
Those concerns are real. Our systems have failed disabled people and their families in far too many ways.
Here’s the tension: while these communities may be an option for some disabled people who knowingly and freely choose them, they cannot become the option or a substitute for investing in real, everyday community inclusion.
We must ask a hard question: are we building community, or are we quietly rebuilding segregation with better landscaping?
I was once told I should live in a low-income housing community simply because I have a disability. No one talked to me about my goals, my abilities, my ambitions, or the life I wanted to build. Someone saw my disability and immediately decided where they believed I belonged.
I did not accept that path.
Today, I am the CEO of a disability-led organization. Every day, our work proves what becomes possible when disabled people are included and trusted to lead the programs, policies, and decisions that shape our lives.
My story is not about “look what I achieved.” My story is about what happens when people stop deciding our futures for us before we even get a chance to speak.
And I’ve also seen the opposite. People often believe they know what is best for disabled people, but what they design is frequently the opposite of what we are actually asking for.
A few months ago, I published a blog saying that parents do not represent the disability community. After that, I received some nasty and even threatening emails from family members.
So let me pause here and be very real. I am not only a disabled woman. I am also a mom of a teenager with intellectual and developmental disabilities. And I have lived this tension from both sides.
My son has never been placed in segregated environments. That was not accidental, but it was a constant fight. At almost every IEP meeting, the default suggestion was separation, a segregated classroom, a different track, a “more appropriate setting.”
At one point, I started an IEP meeting with a simple line: before you suggest segregation or moving him off a diploma track, you may want to Google me, because I understand the long-term consequences, and that is not the future I am accepting for my child. (My son gave me permission to share this). And today? He is thriving. Not because he was separated, but because I expected him to grow in real environments, not isolated ones.
That experience shaped me deeply. It also made something very clear: even well-meaning systems default to segregation when they are uncomfortable with disability in everyday spaces.
But I also want to acknowledge something important. After that blog, I received an overwhelmingly positive response from disabled people themselves. They said things like, “Why won’t anyone listen to us?” and “I’ve been saying this for years, but people keep talking over me about my own life.”
That response confirmed something I already knew: too often, disabled people are not centered in decisions about disabled people, and it’s damaging.
Families can become powerful advocates—but sometimes, without realizing it, they also become gatekeepers. Not out of malice, but out of fear, exhaustion, and systems that have left them with very few good options. Y’all, the system is broken.
But being a parent, provider, or professional does not equal lived experience of disability. Supporting a disabled person is not the same as speaking for an entire community.
This is one of the biggest challenges we have to sit with: good intentions do not automatically lead to good systems.
This is especially true in housing. We have to ask who is actually driving these disability-specific developments. Are disabled people leading the design, or are others creating what they think a “good life” should look like for us?
If disabled people are not leading from the beginning, we are not co-designing; we are being placed. Placement is not the same as choice.
For generations, disabled people were separated from society. Institutions, segregated schools, sheltered workshops, group homes, and programs were places where other people controlled nearly every part of daily life.
The disability rights movement fought to change that. We fought for the right to live in our own homes, attend neighborhood schools, work real jobs alongside non-disabled peers, use public transportation, build relationships, and participate fully in community life.
And we are still fighting because inclusion is not just a value—it is an outcome. We want good outcomes, right?
Research and lived experience both show that disabled people experience better quality of life when we are included in everyday community spaces: stronger relationships, more employment opportunities, greater independence, increased self-determination, and a deeper sense of belonging.
Inclusion is often talked about more than it is funded. Segregation is often easier to build than accessibility. Systems are still designed around control instead of support.
When nearly every part of a person’s life, home, work, transportation, social life is tied to disability-specific systems, it becomes harder to build natural relationships outside of those systems.
Obviously, being around other disabled people is not the problem. Disability community, culture, and peer connection are essential (and honestly, sometimes the only place you can fully exhale and be yourself).
The problem is when separation becomes the default structure instead of one option among many.
And right now, we are seeing something concerning- segregation returning with better branding. Nicer buildings, better marketing, softer language—words like “village,” “community,” and “inclusion.”
But we have to ask – if disabled people are still primarily living, working, and socializing within a closed system, what exactly has changed?
A coffee shop, walking trail, or pool does not automatically equal inclusion. If access to the broader community is still limited, we are not building inclusion, but we are redesigning separation with better lighting and maybe a nicer welcome sign.
The most frustrating part? We already know what works.
Home- and community-based services (HCBS) allow disabled people to live in their own homes and receive the support they need. That can include personal care, transportation, employment support, assistive technology, home modifications, respite, and daily living assistance.
The promise of HCBS is simple: you should not have to move into a separate system to get the support you need to live your life. Services should follow the person, not the person being forced to follow the services.
But in reality, HCBS is underfunded, overburdened, misunderstood, and often inaccessible. Individuals and families face long waiting lists, underpaid support workers, and complicated systems that are exhausting to navigate. And instead of fixing those problems, we often build parallel systems.
So I have to ask- what if the same energy used to build disability-specific communities was used to fix HCBS? What if that same focused power was used to pay direct support professionals a living wage? What if we invested in accessible housing across every neighborhood instead of concentrating it in one place? What if transportation systems actually worked? What if employment supports were real?
Because we are not short on ideas, we are short on political will (and occasionally, patience).
I also want to be fair that not every disability-focused housing model is the same.
We work closely with SOS Care in the Myrtle Beach area. It offers apartments, but not as a closed-off village or segregated campus. People can come and go freely. It is not presented as the only option or even the “ideal” option for everyone. It is one option within a broader commitment to expanding choice. And they have other options and are actively advocating for home- and community-based services.
Again, the issue is not whether disabled people live near each other. The issue is whether we are being separated from everyone else by design.
An option expands choice. A system limits it.
So here are the real questions we need to sit with: Are disabled people actually leading these housing decisions, or just being consulted after the fact? Do residents have real control over their daily lives? Can people choose their supports freely, or are services tied to housing in ways that make leaving impossible? Is this truly one option among many, or the only realistic option because everything else is inaccessible? Are we building bridges to the broader community, or building beautiful barriers that still separate us?
Because safety without freedom is not inclusion. And comfort without choice is not dignity.
Disabled people deserve more than a safe place to exist. We deserve systems that allow us to live fully in the world, not apart from it. We deserve services that follow us, choices that are real, and communities where we can live, work, love, and belong.
And here is the final challenge I want to leave you with: if we truly believe in inclusion, then we have to do the harder work—not just building new places for disabled people, but transforming the places that already exist so disabled people are fully part of them.
Let’s stop asking how to build better separate systems, and start asking how to build a world where separation is no longer necessary.
“Nothing about us without us” is not just a slogan. It is a warning. And it is also a responsibility (and honestly, a reminder that we should probably be in the room from the beginning, not the “surprise, we already decided” stage).
Kimberly Tissot, Able SC CEO
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For over 32 years, Able South Carolina has been a critical force for disability rights, belonging, and the right to live on one’s own terms. As a disability-led organization, we don’t just serve our community—we are the disability community. We Are All Able SC! We’re calling on allies, advocates, and community members to generously invest in disability empowerment and justice. Please invest in those most affected and impacted by policy decisions. Visit allable-sc.org today to make a donation.