Disabled people, self management, and 'being controlling'

I sometimes hear disabled people being spoken of as demanding or controlling. And it never sits well with me. Of course some individuals might be being unreasonably demanding, but most of us....just aren't.

Only I couldn't see how to put this into words.

My current situation however has given me a really practical example of why a disabled person asking for specific things, specific timings etc may not actually be being 'demanding'.

So:

I have a hypermobility syndrome, autonomic dysfunction, and some kind of neurodivergence.

My usual self management and pacing strategies rely on responding to my body's needs in order to maintain as good a level of functioning as possible. So if I'm doing something and I get my body's warning signals - being more uncoordinated or floppy, or I feel sick or dizzy, or increased pain, or decreased concentration, or increase sensory sensitivity, or wanting to cry etc - then I respond to those symptoms: resting, moving, eating, drinking, changing position, adjusting temperature or noise levels, postponing or changing tasks, adjusting priorities. etc. This is a constant process throughout the day.

All these adaptations mean that overall I can do a lot more than if I'd tried to 'push through' and it has also improved my overall health long-term.

The thing is: this approach requires me to have complete control over my schedule, and a lot of control over my environment. Not because I like or want control, but because I need it in order to maintain my ability to function.

Uncontrollable things (like appointments, or heatwaves) are planned around with great care. You could say that when there is a thing out side of my control, I need greater control of everything around it in order to maintain my health.

However: I am currently in the process of moving house.

This means: estate agent visits, potential buyer visits, telephone calls, paperwork. All against a background of 'My entire house must be completely clean and tidy for every viewing, and I must be out of the house for the duration'

It's all on other people's schedule, and I have very little control over the timings.

The effect: I can't manage my health as I usually do. Planned rest periods are interrupted, additional tasks have to be done whether I'm well enough or not and the result is that I've noticed a drop in my overall functioning. Because I do not currently have the consistent level of control over my day that I rely on to manage my health.

It's only for a short time - until I sell the house, but it's really opened my eyes to how much difference having control makes.

What this has taught me is that the 'control' I usually operate with isn't me being controlling because I 'want' control - it's me doing my best to maintain the health I have, and without it I will, quite simply, get worse. Quickly.

So when you next interact with a disabled person who is 'being controlling or demanding' - please step back and look again, because maybe in reality all they are asking for is the basics that will allow them to function, to be part of society, and to not get worse.

Am I saying that the disabled persons 'demands' should always, without question, be followed? No. Compromise is often needed. And there might even turn out to be different ways to meet the need that will work even better than the original suggestion.

But I am saying that if a request can't be met, or a compromise may be needed: ALWAYS approach it from the perspective that they are making that request for a very good reason.. This way, if the 'demand' (or more accurately: need) can't be met in the way initially requested, then you can work together to create alternative strategies, extra support, etc that will meet that need in a different way - and in doing so maximise symptom/health management, and therefore also maximise their ability to join in.

(Note: In my experience this also applies to things like emotional and sensory regulation, not just pain and fatigue).