This week I had to ask the Department of Work and Pensions Access to Work scheme to fund me taking my disability assistant to a conference on long term care in Copenhagen. They asked why I needed to go, and to take her. I explained that part of my job as a professor to attend international conferences, and that due to the fibromyalgia I couldn’t navigate my way through unfamiliar places, and I needed help with transport.
My assessor said ‘I didn’t know disabled people could be professors.’
Of course, I only thought of Professor Stephen Hawking twenty minutes after that – at the time I was too gobsmacked that the someone working for Access to Work (whose purpose is to support disabled people IN WORK) was surprised that disabled people could be academics. It, after all, a job that involves a lot of sitting down, and lends itself to the kind of practical and physical support that Access to Work can easily fund.
But the ableism didn’t stop there. Because I needed her to be with me at the conference to help me find my way around, and negotiate things like lunch queues and taxis back to the hotel, my disability assistant needed to be registered. Access to Work were obviously not going to fund her full conference fee: she was there to help me, not listen to papers on long-term care policy.
However, there was no way to register an assistant. At a conference designed specifically for academics to share research on care policy and practice, no-one had considered that a disabled person *needing* care might attend.
As part of preparing for her attendance, my assistant checked whether the boat trip planned as a social event would be accessible for me. Yes, she was assured, the gangplank was level, and there would be assistance on and off the boat. Well, good job she checked, and decided to accompany me, because access to the boat was down some very narrow and dangerous steps which I could not navigate without her help.
Copenhagen is the capital of a country which prides itself on its universal welfare state and delivery of long-term care. Citizens of Denmark have the right to access support services if they need them: unlike in the UK there is not a presumption that families will provide care and the state will only step in if families are not available or able to care.
However, in my experience of navigating airlines, transport and generally being in public as an obviously mobility-impaired disabled person, this meant Copenhagen was, in fact, curiously inaccessible. This inaccessibility stemmed, I think, from the assumption that a disabled person should not be *out*, working, but should be at home being cared for. And that if they were out, they would have a professional care worker with them.
Shops were frequently inaccessible due to steps, and when I attempted to enter using my crutches (and at times shuffling upstairs on my hands and knees because honestly, my desire for Danish pottery to take home as a present for my daughter is far stronger than any sense of personal dignity or shame), NO-ONE offered to help me. At cafes, noticing that I couldn’t balance a tray and crutches, not a single server offered to carry my tray for me. Taxi drivers seemed genuinely puzzled as to how to accommodate me and my crutch, and in fact I didn’t see a single wheelchair user or wheelchair accessible taxi the whole time I was there. Disability assistance at Copenhagen airport seemed to rely on the presupposition that you would have a carer with you to phone the wheelchair operators when you entered the building, as information directed me to line up in an enormous queue to check my luggage in and then ask for assistance at the check-in desk. ‘The WHOLE REASON I have booked disability assistance is that I CANNOT queue or stand for long periods’ I irately told the airline staff, who seemed to think this was not their problem. ‘Could you PLEASE call disability assistance here RIGHT NOW to help me before I fall over and block the queue?’
I have travelled extensively since my mobility and memory have worsened, and in my experience, this is very common in Nordic welfare states, and very UNcommon in neoliberal Anglo Saxon regimes. In the UK, Canada, the USA and Australia, in similar situations, shopkeepers, waiters, taxi drivers, airline workers and other customer focussed personnel fall over themselves to help me. Not only that, but they seem to be able to speak to me and ask me whether they can help, and what kind of help I need, rather than either assuming they know, or asking my disability assistant.
It’s a good job that intellectually and professionally the conference was amazing, because from the point of view of an ethnographic participative study of ableism in action, it was first class. I only wish I had thought to get funding and ethical approval to write it up.
I campaign and research and write extensively about the need for a comprehensive social care system to support disabled people. If we could rely on proper support, I often argue, just as we in the UK can rely on the NHS to treat and where possible heal us without bankrupting us, then disabled people could work, could volunteer, could parent, could participate as full citizens in society without having a burden of gratitude to a piecemeal network of families, friends and supporters. If we could rely on properly funded care we could flourish.
I still wholeheartedly believe that, and my research and personal experience still supports that belief. But every time I have an experience like that in Copenhagen (and similar ones in Oslo, Stockholm, Gothenburg and Helsinki, just to prove it isn’t a uniquely Danish thing) I wonder if the paternalism of the Nordic universal welfare state isn’t somehow stifling co-operative and support in civic society. Shops don’t need to be accessible if disabled people have carers doing their shopping for them. Staff don’t need to be helpful if everyone has a paid helper with them. And I wonder if somehow we have lost the idea of *mutual* care and support: the emotional part of caring that links us all in a harsh world.
I think we all have an obligation to be caring and respectful towards each other, and not just assume that is someone else’s job.