SURVIVOR HISTORY NEWSLETTER

People with learning disabilities – COVID-19 Support and Action Group

Wednesday 15 June 2022

Time: 12:30pm-2:30pm https://us06web.zoom.us/j/97471173675 Meeting ID: 974 7117 3675

1. Present

Jenny Sam Geraldine Simone Lorena Phil

Guest: Alexis Quinn

Charles Ray Sarah

Firielle Lynn

Vicky Russell Joanne

Peter Olcay

Apologies:

Andrew Gary Chris

Olcay Kieran Kweku

Jenny and Lorena welcomed everyone. Everyone introduced themselves.

Jenny welcomed Alexis Quinn who was invited to talk about her experience in hospital and how she escaped the system.

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	Alexis: I’m an autistic person and was detained in an inpatient setting for 3 and a half years - a total of 4 years against my will.
	I was teaching in a local school when my brother died. I also had a baby at the same time. I found it difficult to manage and asked for help.
	I went in to hospital a long way from home. I started to behave ‘challengingly’. In fact it was the services that were very challenging to me.
	When people don’t know what to do, they restrain you. This is when you’re held down and injected with medication.

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	This happens all over the world. This happened everyday & sometimes a few times a day.
	I was also locked in a seclusion room. It’s called ‘long-term segregation’ when it’s for a few days.
	The worst thing about this was the way people treat you. Like you’re not worth anything. It makes you feel very lonely and depressed.
	I was in 12 different hospitals all around the country. This happens to lots of people with autism and learning disabilities. Often because they don’t know what to do with you.
	I was able to escape from the hospital with the help of a retired Doctor and a retired Head Teacher.

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	They picked me up and took me to France where the Mental Health Act isn’t valid. I then went to Africa.
	I was then a lot better, surrounded by people I loved and treated with respect. I could make decisions about when to get up and when to eat.
	I worked for 5 years as a teacher before coming back to England. I now work for the Restraint Reduction charity. My job is to get health and education professionals to stop restraining people.
Questions and comments for Alexis Charles: Respect is so important Vicky: What was it like living in those other countries? Alexis: They’re much less intense. People are more connected to one another and value relationships more.

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They’re not stuck on social media and running around. It’s not all in your face and bombarded with sensory input.

Ray: It sounds terrible and against your human rights. How do you feel now? Alexis: I feel frustrated that Government isn’t listening or involving people with lived experience. I’m not angry with the people who did what they did to me. They’re working in a hard system with little training. Most people were trying, there were only a very few nasty people.

Sam: Did you feel very intimidated when people weren’t listening to you. Alexis: I felt helpless and hopeless. I felt like I wanted to take my life in my own hands. I was just waiting to be restrained again and I didn’t know when it was going to end. I didn’t really know why I was being locked up. Alexis wrote a book that tells her story in more detail Unbroken: Learning to live beyond diagnosis https://autisminjustice.org/Stories/alexis'%20story.html Amazon link

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Joanne: People’s voices aren’t getting heard in Inpatient units. Alexis: I get so annoyed that everyone knows it’s not right and it’s not working.

Simone: I’m really interested about the cultures of other countries and the spiritual side. Also, do you think there’s ever a time when someone should be detained? If not what is the alternative? Alexis: There are times in people’s lives when they’re very distressed and have the potential to harm themselves or others. There should be services in place to prevent this. At the moment there aren’t safe spaces to do this that allows us to connect with others. If people can’t be supported in the community then there should be Crisis Houses in your community, which is a nice place to go to and is safe. Where we are happy to go and your family can visit. What we know for autistic people when you’re stuck in the system it is likely to be for 6 years. Stuck in a place that’s inappropriate for them and makes them more depressed. Nigeria, Tanzania, Kenya and then Egypt are all very difference but for me they all felt very tolerant. I felt very welcome and my colleagues were encouraging and understanding. It’s important to be able to create your own environment.

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In the UK it’s difficult as things are so expensive and fragmented (broken). People don’t let you into their spaces easily – lots of closed spaces and environments. I found in the other countries it was easier to be in other’s spaces.

Russell: I live in supported living and the staff are excellent. We talk to self advocacy groups in America.

Ray: How did you feel when you couldn’t do what you wanted to do? Alexis: I was in a psychiatric hospital where you go when you have a mental illness. But autism and learning disability isn’t an illness. I wouldn’t call it a hospital – where you go to get treatment. I’d call it a warehouse where you’re kept because they think you might hurt yourself or others. I was asking for help for difficulties I had but they didn’t understand it and when I got into hospital it made me worse. I had responses that were seen as dangerous and risky. If they had provided the right support then none of that would have happened. I’m not a violent or aggressive person if people are reasonable.

Charles: I was violent. I hated the way I was treated as if I was a problem. I had to listen to the horrible things said about me. That made me even angrier so the importance of listening is vital, even if the method of communication is not believed by professionals.

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No one seems to believe that I can regulate myself. My mum keeps up the fight so they should listen and give her a break. Alexis: That’s what I was describing. People don’t listen or think about different forms of communication. Geraldine shared some news. The solicitor worded it...‘I want someone to help me not blame me’.

Vicky: Listening to Alexis and Charles has confirmed that many professionals see us as ‘challenging’ and not for who we are, jumping to conclusions. It really makes me very angry. How’s it still happening in 2022?

Ray: It’s unacceptable. Society treats us like ‘stupid idiots’.

Simone: What is your view on the Mental Health Act and what needs to happen? Alexis: I campaign to have autism and LD to be taken out of the Mental Health Act. In my naivety that there will be adequate support in the community. Until that’s the case we can’t take them out of the Act as many autistic people may end up in prison instead. A study done showed that the more hospital beds shut the more PLD went to prison. People may also be diagnosed with a mental illness so they can go to hospital. This is called the Penrose Hypothesis https://mentalhealthcop.wordpress.com/2022/02/03/the- penrose-hypothesis/

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Respect and listening and having the rights services in place are most important.

Simone: It’s a concern that our rights may be weakened by changes to mental health and mental capacity law. We also have to look at the Criminal Justice system and understand what falls under criminal acts and what are mitigating circumstances.

We all thanked Alexis for her time and agreed to keep in touch.

Other news

Everyone wanted to send their wishes to Olcay and Andrew. We agreed that people would send their messages via lorenna.empower@peoplefirstltd.com

Discussion: Current issues in the news

Refugees going to Rwandan and coming from Ukraine

We discussed the issues related to refugees at the moment. Some of the policies and situations were difficult to understand.

Definition: According to the UN Refugee Convention, the

definition of a refugee is someone who: ‘owing to a well-founded

fear of being persecuted for reasons of race, religion, nationality,

membership of a particular social group, or political opinion, is

outside the country of his nationality, and is unable to or, owing to

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such fear, is unwilling to avail himself of the protection of that

country’ (Article 1, 1951 Convention Relating to the Status of

Refugees)

Did people want to invite and speak to the group?

It was felt that it would be good to get a better idea of what it’s like to be a refugee and being in that situation.

Voting

•   Would you like someone who is a refugee? Yes

•   Would you like to invite someone from a refugee

  organisation to talk about the bigger picture? (E.g. Refugee Action) Yes

  We also voted on whether we wanted to find out the experiences of disabilities via the following organisations:

   Inclusion Europe Yes
   Inclusion International Yes

  We then finished the meeting by sharing how we were feeling.

  It was a hot day!
  Next meeting:

  Wednesday 22nd June 2022 12:30pm - 2:30pm

  https://us06web.zoom.us/j/97471173675

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