Two People and a Wheelchair User

In films, people with disabilities are only really represented as dying, planning to die, plotting to overthrow civilization or being cured and welcomed back into the world of valid humans. I don’t subscribe to the kill or cure undertones, nor to the idea we’re either Paralympians, or takers and fakers. We’re as diverse and valid as the huge challenges we face. Every disability has a spectrum. The conditions that others can’t see can be as bad as those they can.

We live by different maps. Our city is full of boundaries that more abled people rarely see but often help create. The psychogeography of our lives still includes being kettled into corners by anything from high curbs and steep stairs to aggressive people and noisy crowds. To exist, we push back at those boundaries, because those barriers disable us. Exclusion sometimes restricts or endangers us more than our actual differences do, limiting our ability to work, rest, play or have a voice and place in society.

I was born with disabilities, collecting more throughout life, many of them invisible. I drove myself five times harder to fit in; a square peg sanded down to fit into round holes. When I was bashing through the barriers without help or complaint, I was accepted. My past work in politics, interfaith, peace-building and with people with special needs, boiled down to trying to protect and increase inclusion. I wasn’t considered properly disabled until I needed mobility aids. Now the wheelchair is what people see first. When people ask what’s wrong with me, I tell them I’m a mermaid; it’s hard to walk with a tail.

On my first trip out after five bedbound months, I bimbled downstairs on my new stairlift, then got whiplash on the uneven pavement outside. Even going into a different room, we need similar risk assessments to those I once used to scale rock faces; I can only venture out when my physical condition, the weather, kit, climbing partners, and terrain, are right.

Any activity can take weeks or more to recover from. My enemies include lifts that are always out of order, ignorance, hiked-up prices and being left out in the cold. My biggest barriers include supposedly “accessible” spaces being used for storage. Disabled loos are often full of beer crates, tables, chairs, even dirty clothes, meaning nobody could move a wheelchair about. One accessible toilet had no door, and a stranger once tried to corner me in another.

The silver lining is that nobody expects me to behave myself, which is useful when dealing with twits who think my life-long disability is an elaborate plot to steal their taxes. Like others, I’ve been subjected to bullying, trolling, harassment, assault, theft and intimidation because of my disability, then labelled a “trouble-maker” or worse when speaking out. When a complaint hearing is held in an inaccessible upstairs room, you know the problem is bone deep. Experiences like this have left me shell shocked and silenced.

It’s easy to make huge differences. A guy once helped us “break in” to a local pub by lifting me up the steps, then a regular told the barman to open up the level side entrance in future. Access isn’t one-size-fits-all; it’s part architecture, part attitude. There are always ways to include more people. If we have to ask to be let in, you may already be excluding hundreds.

If you can't make a building accessible for people on wheels, you could add hearing loops, grab bars, seats and quiet spaces. At events, share the mic with us, use VR, livestream and sign. My access highlights include the handmade ramp at Crimson Tree and my poems being read out to involve me at demos. Cheesy as it sounds, occasionally access is just a smile away. Speak to us. While I’m in a wheelchair, the number of arses – literally – talking over me and about me could fill a book.

I’ve been in conflict zones and stood for parliament, but trying to get my body to work together now feels like trying to pass a UN resolution. I never imagined that at the age of 39, my greatest ambitions would be to safely get into another room alone, make a cuppa, or answer my door. My bum and comedy help cushion some falls, but the truth is that on my own I’d be dead. It’s hard and getting harder for many of us to get the right help, and that’s after we admit to ourselves that we need it. In my case, we started getting meaningful professional support long after I became bedbound. One specialist said if I’d had assistance sooner, my mobility and health needn’t have got this bad.

If this bores you, I can handle that. For millions of us, survival depends on mind-numbingly repetitive battles. I assert my right to be average. Most humans want to be safely part of what is happening around them. Opening myself to more bullying is daunting, but worth it if it helps open doors to others. Nottingham is the city of ShaSa Kitchen, the Women's Centre, the Terrence Higgins Trust, Sumac and more. I'm throwing this out there as the next big challenge. We are your workforce, your neighbours, your customers, comrades in arms and friends in waiting. Do not pity us. Do include us, because you may need us as much as we need you.