Anne-Marie Glasby – Senior Development Officer, Changing Our Lives
Why do people with a learning disability constantly have to prove themselves? And why are they held to a higher standard?
I used to rage about this when working with a teenager in a CAMHS medium secure unit, where if they slammed a door or failed to make eye contact with staff it was at worst written up as an incident, or at the very least remarked upon at ward round. As a mother of teenagers at the time, I had fairly regular catch ups with friends who also had teenagers and the subject of door slamming, eye rolling, answering back etc. came up on a weekly basis. Yet, as we sat having coffee or something stronger we reassured ourselves that this was a perfectly normal part of growing up and they would get over it. Which it is. And they did. It wasn’t a problem and it didn’t need “writing up”.
At Changing Our Lives, during a recent team discussion around safeguarding, we were chatting about a case that had gone to the Court of Protection. It was decided that the young adult (with a learning disability) couldn’t make decisions when they were anxious and therefore could not “manage their affairs” as they did not have continuous capacity and may not be able to make urgent decisions if they were anxious. Now, we only had the bare bones of the case, so it could well have been more nuanced than this but to me, this smacked of another situation where a person with a learning disability was being held to a higher standard. Do any of us have continuous capacity absolutely all of the time? Never had a few too many drinks or been so upset about something, or so crushingly exhausted that we can’t think things through?
How often do we say things like, “I can’t think straight”, “I can’t think about it at the moment” or “I need to wait until I’ve calmed down before I can think about it rationally”? These are not uncommon turns of phrase and I’m sure we all recognise there are times when it would be better for us to wait to make an important decision. Why is this same luxury of time not afforded to people with a learning disability?
We talk a lot under the Mental Capacity Act about allowing people to make unwise decisions if they have capacity, but I would argue there is still a judgement attached to these situations that is far harsher that would apply to those of us without a learning disability.
At the time of writing, many 18 year olds around the country are applying for university places and come September will be deposited, with a car load of stuff at their hall of residence or student flat, ready to embark on what for most is their first real taste of independent living. Their “independent living skills” will range from cooking nutritious meals from scratch to staggering onto campus every day without ever eating breakfast and surviving on pasta, pasta and pasta. Unless they develop scurvy, is anyone (other than their parents, who fill their freezers with home cooked meals, do their washing when they come home for the weekend and respond to numerous WhatsApp messages about life admin) really questioning their independence skills? Granted, there are many young people who have living away from home nailed, but there are equal numbers who really don’t and muddle through anyway. Professionals don’t tell young people they can’t go to university because they don’t know how to cook, clean or pay their bills. None of us are born with “independence skills” or know how to “manage our affairs”. An awful lot us fake it ’til we make it in that regard, but we are given time and space to make mistakes, and if we are lucky, support from our peers and families to work things out as we go. Shouldn’t the same be afforded to people with a learning disability?
Published: 14/01/25
