Lucy Savage writes about the challenges disabled people still face despite improvements.
Some of you will have heard me talking about one of my heroes Judy Heumann (deliciously pronounced Hu-man!), a wonderful American disability activist who died a few weeks ago.
She is regarded by many as the mother of the disability rights movement, showing dogged determination throughout her life in refusing to accept decisions made by those in power who wanted, for whatever reason, to limit the horizons of disabled people. My personal favourite anecdote from her life is of the 26-day sit-in she helped organise against the refusal of government to sign off a vital clause of legislation, Section 504 of The Rehabilitation Act, which prohibits discrimination in the provision of services.
Judy Heumann pictured in in the 2020 Netflix documentary, Crip Camp. The pioneering camp for disabled childen was a formative experience for her. Photograph: HolLynn D’Lil/Netflix
About thirty years ago I was lucky enough to spend three months in California; quite apart from the novelty of warm sunshine in January it was a life-changing experience in a totally different way for me as a wheelchair user. I could go anywhere that a non-disabled person could, including on public transport which was a no-go area in the UK at that time. I had a complete ball getting on buses and the Bay Area underground trains, spending entire days leaving our apartment in Mountain View to wander round San Francisco.
As the Act mentioned had just been passed there was a brilliant advertising campaign with the line “America needs All its Citizens”, such an affirmation to a section of society who had grown up being made to feel at best superfluous. I describe this time as like a weight falling off me because I was free of some of the restrictions I and other disabled people faced here at the time.
I should say that the progress we have made here did not happen by accident; the fact that wheelchair users can now get on buses in London is largely thanks to people who took direct action in the early 90’s, lying down in the road or chaining themselves to buses, actions which would nowadays get them arrested and potentially imprisoned.
From time to time, I hear comments about how much better the needs of disabled people are catered for nowadays. Things have improved but there are still barriers to inclusion which are not an inevitable consequence of a person’s medical condition.
Firstly, and with her permission, I will give the example of the sorry tale of Angie’s wheelchair. When it needed a repair earlier this year Angie was unable to leave home for a month while she waited for an appointment to fit a new part. Consider this alongside the fact that at the last count spending on wheelchair services in the UK was 10% of the Scandinavian equivalent budget. To take another example which affects us all, and with apologies for lowering the tone, how would you feel if you were expected to spend time with friends in a venue with no toilet facilities?
Disabled people are frequently put in this position; establishments seem to think that as long as they’ve made it possible for a person to actually get into their pub or restaurant that makes everything fine and nothing else is needed. When you move to a new area one of the recognised ways to meet people is to join clubs and societies. I tried this once with a national organisation whose groups meet in halls and people’s homes. It was pretty much an unmitigated disaster as there was no way they would be flexible enough to move meetings to an accessible venue, though it would have been perfectly possible. I gave up and stayed at home in the end.
Currently only one third of London tube stations are accessible; when you think about this and the fact that the blue badge scheme for disabled parking is not valid in several central London boroughs- dedicated disabled bays are very few and far between- it is still much more difficult for a disabled person to get around in London. (I can hear some of you mentioning the subsidised Taxicard scheme here; this, though better than nothing, is limited in provision).
Only last week I encountered a classic “Does she take sugar” situation. This is where a disabled person communicating with someone is ignored, the person with them being addressed instead. I was attempting to pay at a bar for a meal; despite the fact that I was the one waving a credit card the customer assistant ignored me and looked to my companion to complete the transaction. In 2023 this still goes on.
The tendency of the media in particular to portray disabled people as either Paralympian superheroes, saints or tragic victims reinforces the “othering” of people. I think this is one of the reasons behind the not infrequent incidents where complete strangers find it acceptable to tell a disabled person that they’re definitely not ok as they are, either by offering to pray for them (because having an obvious disability must mean they need it), telling the person that God wants to heal them (see above reasoning) or even telling them their life is not worth living.
In a sermon a while back Lucy floated the idea that disability is a much more common experience than perhaps, we traditionally think. I suggest that disability is not a fixed category; it’s one in which many of us will find ourselves at some point in our lives, especially as we age. Hardly anyone has a perfect body, hence the division is not as simple as “us” and “them”.
There are signs of hope- it’s becoming more common to see disabled presenters on a variety of mainstream programmes. I’d like to live in a world where, amongst other wishes, the kind of incidents I describe never happen; where we acknowledge that we are all imperfect, including physically, and one in which we work together to get rid of some of the obstacles to full participation, recognising that we all have things to offer.