A living position
Holding both. Barriers and bodies.
Disability seems to be both the barriers society builds and the realities of impairment, illness, pain and high support needs. I try to hold both at once, and to stay led by the people who need the most support.
Why this matters
A movement that centres the most articulate can leave behind the most in need.
In the work for equity there is a risk worth naming, gently and often. If we frame disability as purely the impact of the environment, barriers only and no impairment, we end up telling a story that mostly fits people who, given the right adjustments, can largely get by.
That story suits the least disabled among us. Pushed too far, it quietly implies that if society removed the barriers, support would no longer be needed. Which undercuts the case for the care, the funding, the medical treatment and the lifelong support that more disabled people need whatever their environment looks like.
I would rather keep checking myself against that risk than pretend it is not there.
The barriers are real, and so are our bodies.The whole position, in nine words
In my own words
I believe in the social model of disability. So much of what disables us is the way the world is built, not the fact that we exist, and I want to keep working to change that.
I also try to hold something alongside it. Our bodies and minds are real, and some of us, especially the most profoundly and multiply disabled, will need real, lifelong support whatever the world looks like.
I do not want our work for equity to become a story that only fits those of us who need the least, because that can quietly take support away from the people who need the most. So I try to hold both, and to stay led by people with the highest support needs.
Removing barriers matters enormously, and it never replaces care. I know I will not always get the balance right, so I keep listening, keep learning, and welcome being challenged.
This is not theoretical for me. In our household we live at both ends of it at once. Articulate enough to be told we are managing, and disabled enough to be out of school. Chronically misunderstood in both directions, and often in the cohort nobody plans for.
The specific danger
Three things I watch for.
Over claiming that it is only the environment
This can be used, including by governments, to argue that with the right attitude or a ramp, disabled people no longer need substantial support. That logic erases impairment and it defunds care.
The movement thinning into a lighter version of itself
The neurodivergence movement has been shaped largely by verbal adults with lower support needs. People with intellectual disability, profound and multiple learning disabilities, non speaking autistic people and those with the highest support needs are too often under represented. A politics built around the least disabled can, by proxy, narrow rights for the most disabled.
Confusing independence with autonomy
Someone may need extensive support for life and still hold full rights, choice and self determination. I try not to trade one for the other.
How I try to hold it
Both are real
Barriers are real and impairment is real. I try to hold both, and to notice when I am drifting too far into one.
Equity grows from the margins
I try to judge the work by how it serves the most disabled, not only the most articulate. Nobody left behind.
Removing barriers does not replace care
Changing the world around someone matters enormously, and it does not cancel the duty to fund care, support, treatment and lifelong provision.
High support needs are honoured, not hidden
Naming someone's significant needs is not deficit talk. Leaving them unnamed quietly denies them the resources they are owed.
Designed with, not for
Disabled people, and the families and parent carers of disabled people, including those who communicate without speech, are the experts on their own lives.
Reflect before pushing
In advancing any agenda I want to be careful not to disable disabled people further, by speaking over those who need most, or by framing things in a way that thins their support.
Who I stand with
This position is not mine alone, and that is the point.
The social model was never a denial of the body. The scholars and disabled people's organisations who built and carry the movement say so themselves, which is why holding impairment alongside barriers is not a dilution of the model. It is the model as its own architects state it.
The affirming anchor
Dr Luke Beardon and the Golden Equation, autism plus environment equals outcome. I studied under him to distinction level, which is where my own grounding in this comes from.
The scholars who insist on the body
Tom Shakespeare on the interactional position. Liz Crow, who wrote that we cannot pretend with any conviction that our impairments are irrelevant. Jenny Morris. Sally French.
Disabled people's organisations
Disability Rights UK define the social model as being about people with impairments who are disabled by barriers. Impairment is named, never erased. Inclusion London on disability justice.
The most overlooked
Mencap and the Foundation for People with Learning Disabilities on profound and multiple learning disabilities, where many need complex lifelong care that no environmental change removes.
Self advocacy that includes everyone
The Autistic Self Advocacy Network, deliberately including non speaking autistic people and people with intellectual disability. Nothing about us, without us.
Disability justice
Sins Invalid and the ten principles. Cross disability solidarity, and nobody left behind.
In practice
Too Hot To Be Safe
My heat campaign is this position applied to a real policy failure. Shade, ventilation and cool rooms, because barriers are real. And funded cooling for the people whose bodies cannot regulate whatever the room is like, because bodies are real too. Barriers and bodies, in one set of asks.
This is a working position, held with humility in a changing landscape. It is not a set of rules and it is not the last word. It will grow, reflect and adjust as I do. Offered for thought, and open to challenge.