Don't fence me in!

Medicines and Healthcare products Regulatory Agency Health and Safety Executive Royal College of Occupational Therapists

Recent experience with a private company of health professionals led me to think again about how society in general, and health professionals in particular, keep disabled people subjugated. That may seem a strong word choice, and even unreasonable, especially if you are a health professional. I’m sorry if it bothers you, but the number of rules and regulations that surround disabled people’s lives, and the interpretation of those rules and regulations (often very narrowly) by health professionals, makes it difficult for disabled people to live autonomously and be active citizens, working and socialising like everyone else.

Take wheelchairs, for example. My wheelchair is unable to be pushed easily. It’s an electric wheelchair and in theory it has a freewheel option that enables the chair to be moved without motor support. In practice, freewheel is not. Indeed, it’s really difficult to push the chair when it’s in freewheel even without me in it. If my wheelchair breaks down when I am away from the house, say working in London, it’s going to be the very devil of a job to get me back home and get it repaired. When I explain to relevant people how challenging that is, there are always sympathetic noises. But the problem is the interpretation of regulation. Apparently, it’s not safe to have a real freewheel option, because carers may leave the wheelchair in freewheel at the top of a slope, and that would be disastrous. On occasion, when more creative wheelchair engineers have been explaining this to me, there has been a waterway at the bottom of the slope that a carer once left a wheelchair user at the top of. To my mind, that seems a lot less likely than my chair breaking down when I am out and about. And the safety risks to my PAs and anyone else involved like taxi drivers of needing to push the chair will be quite high. Having done extensive research into the wheelchair market when I originally bought this chair, I haven’t been able to find a wheelchair that has a genuine freewheel option. I’m mitigate the risk by having the chair regularly serviced by a competent company, and replacing batteries and parts as soon as it’s suggested that I should. So it was somewhat frustrating when the company I was working with stated that it wasn’t safe for my PAs if I continue using this wheelchair and I must find an alternative with a proper freewheel option, as if I had ignored the risks both to my PAs and myself.

Take my bed as another example. I have a 4-foot bed, commonly known as a small double. This makes it easier for my PAs to work with me work on either side of the bed or even sit on it if they need to be closer, and instead of having to move my body to turn me, they can just roll me. The bed has an electric motor and can be raised so that it’s at the right height for my PAs to work, as well as raising the back and the feet should I wish to. According to the company, I have to replace this with a narrow bed because it’s too dangerous for my PAs. This without any consultation with my PAs or me, or asking why I chose this size of bed in the first place and the benefits we all gain. Again, regulations were trotted out as if they explained everything.

As a final example, I am now to take a mobile hoist with me everywhere I go, because the method of transfer onto the toilet that I have used with my PAs for 20 years is unsafe. Once I got over the shock of being told to do this, I found it quite funny. The prospect of my PA dragging a mobile hoist onto the train, off the train, along the streets of London from Euston to Saint Pancras, and through the shopping centre at Westfield to reach one of my jobs is comical. And extremely awkward for my PA (perhaps even unsafe), not to say somewhat undignified for me! Once again, regulations are the apparent reason for this.

I was not, during the supposed ‘holistic assessment’, asked how I mitigate risk on a regular basis, nor was the PA with me asked if their work environment is safe for them. I work with my PAs, finding safe, comfortable ways to work together. I make adjustments in the way that I work with different PAs as each of them is a different height, build and strength level. We work well together. If something isn’t working for them, we find a different way to do it. I am a responsible adult – so I expect to be trusted to take care to ensure that I and my PAs are not exposed to unreasonable risk.

If I obediently took the company’s strictures at face value, the result would be that I am unable to leave the house. That means I am unable to work or participate in society in any way other than at the end of the computer screen.

Surely this is an unacceptable way for disabled people to be expected to live in the 21st century? The problem I have is, if I want to effect change in the system, where are my levers? How can I, as a working disabled person, provide leadership in impacting the limitations that are placed on us by professionals?

I am a strong believer in good regulation applied well – after all I work for a regulator. My observation is that the regulations around disabled people, our human support and the equipment we rely on may be excellent but are not applied well. I want to change that. I am usually fairly resourceful, but my resources are eluding me. If anyone has any brilliant ideas, please do share…