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.
January 2026
Kickin’ It with Kimberly: Parents Don’t Represent Disability
Let’s be honest: parents of kids with disabilities are not the disability community. Their kids are.
That might feel uncomfortable, but discomfort isn’t the same as being wrong. Parents go through stress, love, and a whole lot of navigating systems, but that isn’t the same as living with a disability. Parents live next to disability. Disabled people live in it every single day, moving through a world that wasn’t designed for us. That’s a big difference.
And I say this as a parent of a child with a disability. I am also disabled, so I see parenting a child with a disability very differently. Parents must partner with advocates with disabilities.
I can and do- fight like heck for my child. I push systems to respond to what he says he needs. I translate his words into meetings, paperwork, and policy fights. But I do not live in his brain. I do not see the world the way he sees it. I do not move through spaces the way he does. And I do not experience how differently he is treated when I am not in the room.
That distinction matters.
Too often, meetings and policies about disability are full of parents instead of disabled people. And while parents usually mean well, speaking for us can water down or even silence our voices. Good intentions don’t always equal good impact. In fact, history shows that some of the most harmful policies from institutions to exclusion in schools came from parents who thought they knew best. This could have been different if we had that partnership.
Please don’t get me wrong: parent advocacy matters and is needed. Parents are often the first to fight for their child in IEP meetings, at the doctor’s office, etc. Parents have moved mountains to get services and open doors. That kind of advocacy has changed lives.
But here’s the thing, parent advocacy can’t replace disability advocacy. Parents can push systems to listen, but they are not the voice of disability. Disabled people are. Lived experience is not transferable, and lasting change only happens when those most affected are leading the work.
We also hear parents say, “My child can’t.” And trust me, I get it. As a parent myself, I know that urge to protect. But sometimes protecting too much actually holds kids back. We also hear: “Well, my child has an intellectual disability or complex medical needs.” To that, we don’t even blink. Because we know plenty of people with significant disabilities who are not just surviving but thriving — leaders shaping history and culture. People like Hari Srinivasan, Liz Weintraub, Judy Heumann, Lois Curtis, Stephen Hawking, Keith Jones, Michael J. Fox, Ed Roberts, Frida Kahlo, Alice Wong, and the Able SC team. Leaders like these are the reason we have rights today. Leaders with disabilities became leaders because someone stepped back or helped elevate the voice of people with disabilities.
Too often, disability policy and advocacy spaces are dominated by parents instead of disabled people. When that happens, disability stops being about civil rights and starts being framed around fear, protection, and control. That shift is not accidental. It is paternalism, and it has a long, harmful history in the disability community. This is why it’s critical to partner on these policies.
Historically, some of the most damaging disability policies were driven by parents who believed they knew what was best. Institutions. Segregated schools. Guardianship. Forced “care” instead of autonomy. These systems were built on the belief that disabled people could not be trusted with their own lives. That belief still shows up today, sometimes even when disabled people are present but sidelined, tokenized, or expected to speak without real power. This is where, if parents and disability advocates partnered, the world would be better for the disability community.
Parent advocacy has significant value. Parents are often the first line of defense against broken systems, and many become strong allies. But allies do not replace lived experience, and lived experience alone should not be used as a checkbox. Parents do not get to speak over disabled people, speak for us, or occupy seats meant for disabled leadership. And disabled people at those tables must be empowered to influence outcomes, not just share stories.
Disability justice demands intentional, skilled disabled leadership. Period. If decision-making spaces are not centered on disabled advocates with real authority, the outcomes will reflect non-disabled comfort, not disabled freedom. “Nothing About Us Without Us” is not a slogan. It is a standard.
Disabled people are experts in our own lives—and when paired with systems knowledge and real power, that expertise changes everything. Until that truth is respected, disability policy and implementation will continue to fall short of justice.
Here’s what real allyship from parents looks like:
- Using your voice to fight for access, while also making space for your child’s voice.
- Knowing when to speak up and when to step back and let your child speak for themselves, even if it’s messy.
- Giving support to grow, not limits that hold them back.
And here’s what truly represents disability:
- Our voices. Disabled people speaking for ourselves.
- Our culture. Disability isn’t just medical; it’s identity, community, and pride.
- Our leadership. Nothing about us without us. Period. If you are talking about disability, where are the disabled leaders at your table?
So here’s my challenge:
- Disabled people: Own your voice, it’s the mic that matters most.
- Parents: Keep fighting, but don’t take over. Clear the path so your child can lead.
- Allies & lawmakers: Stop turning to parents as the “disability voice” as they are the “parent voice.” Start including the experts- disabled people. Parents can join in as well, but don’t forget us. The people who have to live with the policies. Parent advocates represent parents. Disabled advocates represent disabled people. We can be partners, and both perspectives should be heard.
Parent advocacy is powerful. But disability representation belongs to disabled people. Real progress happens when parents and allies step back so disabled people can step forward. I am not saying parents should not be at the table, but they should also ask where the disabled advocates are. This is how really good change happens.
PS: Mom — Thank you for trusting me to live my life, not hovering or wrapping me in fear. Even when that meant letting me do my own thing (yes, including climbing onto a roof with my friends just months after a spinal fusion 🙃). You didn’t try to control my choices; you trusted my judgment. That trust didn’t make me reckless; it made me independent, resilient, and confident enough to claim my own voice.
That’s what real allyship looks like. Support without control. Belief instead of fear. Space to grow instead of ceilings to stay under. 💚
PSS: Family Connection of SC, thank you for getting this. You all are a true partner and we have made great change together.
– Kimberly Tissot, President and CEO, Able South Carolina
For nearly 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!
Now, Able SC faces a genuine crisis. 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.