Central to the Mental Capacity Act (MCA) are its principles. Firstly, we must never assume people can’t decide how to live their lives unless there’s evidence that they lack capacity for those decisions. Secondly, you can’t lawfully make decisions for people until you’ve done everything you can to enable them to decide for themselves what to do.
I once heard this explained by an exceedingly round man who said that, when working with people with all kinds of disabilities, he would always ‘bend over backwards’ to support their decision-making. It’s a charming picture that has stayed with me, as a reminder of how our comfort, as providers of services, is far less important than the way we enable people by working within these principles.
And there is an increasingly powerful push coming from the UN Convention on the Rights of Persons with Disabilities (CRPD) to say we must put at the forefront of our services ways to support people to have as much choice and privacy and freedom as they possibly can.
Deep Democracy Day
Thanks to the generosity of QCS, which paid all my expenses, I went to this extraordinary and worthwhile day in Leeds. Inspired by the CRPD, it focused on learning from people with learning disabilities how to enable them to exercise the choice and freedoms that most of us take for granted. This put into practice the ‘nothing about us without us’ ethos – for example, the charities involved are led by people with learning disabilities – and did it in unusual, fun ways.
We played games where we had to do the opposite of what we were told – ‘stop’ meant ‘go’ and vice versa: really hard, showing how words can be used to confuse any of us. And we acted some real-life scenarios that some of us had experienced, to work out together what could have been done to improve the situation or prevent it happening again.
Thoughtless cruelty and discrimination
The day was immensely positive, but we couldn’t ignore the examples given by people there who lived with learning disabilities of times when they had been treated badly. These are some of the real-life situations we enacted:
Example 1
Jilly* needed a taxi to get to her Universal Credit assessment. Her sister rang the taxi firm for her, and paid in advance; it came, and they left in good time. But the taxi driver stopped at a filling station saying he had to get something to eat; he went inside, leaving Jilly in the car. And there she sat, getting more and more anxious as the time ticked by. After a while she thought she’d better go in and find out what was happening, but she found she was locked in the car. Eventually he strolled out, and didn’t reply when Jilly, almost in tears, said she was frightened she would miss her appointment. Jilly did miss her appointment. When her sister rang the taxi firm to complain, the receptionist wouldn’t even take the details, saying their drivers had a right to take a break.
Example 2
Maxine* has a mild learning disability and considerable physical disabilities; for this reason, she moved into a care home in her early 50s. One evening, two of the home’s carers came into her room when she had been helped to bed (so was unable to get out of bed without help). They opened the cupboard where Maxine kept a bottle of sherry and some cans of beer: they helped themselves to Maxine’s drinks and laughed as they drank them. Maxine, devastated, told her cousin Ed what had happened. Ed helped her complain to the manager. However, the outcome was that all residents were told they must not keep any alcohol in their rooms.
Example 3
Harry* is 26 and has a tenancy in a supported living setting, with three other male users of the service. He goes to a gardening scheme, where he has met Vicky, and they have become increasingly close. Harry plucks up the courage to ask the staff team-leader if Vicky can come and spend a night in his room; they really want some privacy to get to know each other better. The answer is a blunt ‘No way’ – this isn’t that kind of establishment! Anyway, says the team-leader, we don’t have any female staff here overnight so it wouldn’t be legal or safe for us to have a female visiting.
*Names have been changed
You’ll be relieved, I know, to learn that senior commissioners were part of this day and arranged to follow up on the appalling way these users of services, and others, were treated.
What can we learn about empowering people?
This event vividly brought home to me two main points.
Firstly, the powerlessness of people who use care services. All too often, people with disabilities are expected to put up with having their right to privacy ignored and their choices belittled. People who provide services to them somehow see them as ‘different’ in a way that can lead to thoughtlessly cruel treatment.
And, secondly, that an essential part of advocacy is peer advocacy. Yes, as a social worker, I did of course advocate for my clients; sometimes things improved for them as a result. But I now see that I risked perpetuating the idea of difference, reinforcing people’s perception of their own powerlessness. What I saw on this day, and what worked so impressively, was the powerful way that people with similar disabilities were able to model for each other ways to stick up for themselves, when their most basic rights are being walked all over. This was achieved by using role play in a relaxed atmosphere. I won’t forget the young woman, helpless with laughter in her wheelchair, modelling an extremely robust response – brief and with four-letter words – that Harry might have used when his request for a bit of a private life was sneeringly refused.
To live within the principles of the MCA and the CRPD, let’s all do more ‘with’ people and perhaps a bit less ‘for’ them!
