SURVIVOR HISTORY NEWSLETTER

Self Advocate’s Support and Action Group Wednesday 08 February 2023 Time: 12:30pm-2:30pm https://us06web.zoom.us/j/97471173675 Meeting ID: 974 7117 3675 1. Present Andrew Ray Olcay Russell Phil Sarah 2. Apologies: Jenny Firielle Chris Peter Vicky Andrew welcomed everyone to the meeting. Our last meeting was 8th February. 3. Check-in Andrew asked how everyone was feeling. Everyone shared how they were feeling and their news. 1 Firielle: told us about her acting work. She finished her tour with the play Milk and is now doing a performance with Dark Horse. They are currently touring. Russell: said he had just been to a face-to-face speaking up meeting, which was really good. He also told us that Joanne won the Derek Russell Award for Outstanding Leadership at the North West Self |Advocate’s conference. Peter: said he has been well. He told us about some of the jokes and play on words that he works on. He shared some that he had worked on earlier. Ray: said he has had appointments, but all is ok. He asked Firielle about her acting and then talked about the film with the actor James Martin who has Down’s syndrome. We then spoke about George Webster who is a presenter who has Down’s syndrome. Philipa: said she was ok and was trying to stay warm in the cold weather. Sarah: said she was ok but hasn’t been out of the house since Sunday. She did go for a long walk in some gardens at the weekend though. Olcay: told us that she is looking forward to be a God Mother to her nephew at the weekend. She will be reading a poem at the Naming ceremony. Andrew said he’s feeling a bit rough. He hopes he doesn’t completely lose his voice as he is supporting 2 Olcay at the ceremony to read the poem. Chris: joined us after work. His day started at 6:30am. He said he is glad to be back at work. He also got his car fixed so travelling was easier. He has been busy doing some at work for different projects. Chris showed us an example of a piece of his art he has just completed. Andrew asked Chris if he has considered having an exhibition. Chris said he is looking into it. Chris shared another shocking story of neglect that had been in the news. Vicky: said she was at the North East regional event last week running Zumba sessions. Peter read a poem out before the break... In times gone by you made us smile, To boldly go the extra mile, Seasons came without much bliss, To see your face, we’ll sorely miss. A new dawn breaks the birds do sing, To think of you is a wonderful thing, As hills and mountains filled with heather, Our memories of you will last forever. This poem is aimed at those who have lost a loved one. International Women’s Day was also acknowledged 3 Peter played some music in the break. 4. Discussion: Themes for 2023 At the last meeting we agreed to focus on the theme of ‘inclusive communication and independent living’. We agreed topics to focus on over the coming meetings. Topic 1: Our local Councils and inclusive communication Topic 2: Independent Living and inclusive communication. Topic 3: Health (Our first contact with health services, such as GPs, pharmacies, emergency services, dentistry) Topic 4: Dentistry and inclusive communication Topic 5: Specialist therapies and referrals Topic 6: Relationship with health professionals Topic 7: Early deaths for people with learning difficulties Topic 8: Homelessness and inclusive communication Topic 9: Bills, banks and inclusive communication. Topic 10: Informed and supportive decision-making and inclusive communication. 4 This week’s topic is Topic 2: Independent Living and inclusive communication. What does independent living mean to you, and what would inclusive communication? Vicky: need good communication for everything we do around independent living. It’s not just about verbal communication. Olcay: said there are different ways to communicate, like communication books so it helps you remember things. It is very frustrating when people don’t listen to us. Peter: said he uses his hands and gestures a lot when communicating. Vicky: said knows how frustrating it is when people are not listening to you. This is the reason why we need to get the message out about people listening to us. As I like to say listen with your eyes as well as your ears. Peter: said it is really upsetting when people don’t listen, especially people in authority. Chris: Independent living is about being able to go to work tomorrow, the reality is the welfare system as it stands doesn’t allow you live independently, certainly with dignity it doesn’t. Chris said he’s writing a blog about care for the APLE Collective this week and one of the points raised is 5 people with care packages can be more expensive than the individual’s personal income. A support worker is useless if someone’s fridge is empty. It shouldn’t be the case that people with disabilities are expected to live in care homes. “I work and drive, I do not belong in a care home”. Having a job helped me stay in my own home. Firielle: spoke about living in an institution in Woking. She didn’t like it as it felt like staff were controlling her life. She had to follow their rules. I also got bullied and had no freedom. She also had ECT (Electroconvulsive therapy). I had to stand up for myself, speak out and I got myself out of there. My parents listened to me and helped me. We then moved to Yorkshire. Electroconvulsive therapy, or ECT for short, is a treatment that involves sending an electric current through your brain, causing a brief surge of electrical activity within your brain (also known as a seizure). The aim of the treatment is to relieve the symptoms of some mental health problems. Chris: asked, what about those with no family around them? They are at the mercy of a care system that is inhuman. Vicky: said this is the main reason why there needs to be some change to the care system. We cannot allow this to happen. My worry also is who else is going through this but doesn't have family as back up as Chris 6 said or have the confidence to speak up like Firielle did? Chris: spoke about the environment in the care home where his mum is and the housing crisis that means it is difficult for people to find places to live in the community. The system’s broken! Attitudes that people with disabilities shouldn’t live in communities or live beside each other should be challenged. Andrew: asked what action we can take to raise these issues and bring people together around ‘independent living’. We read a message from Charles To all the wonderful people at the advocacy group I have so enjoyed being with you all and learning about the difficulties we have just because we have some sort of difficulty making sense of this world. Then society seems to ignore our rights and then we have to keep fighting not to be lost to oblivion. I have enjoyed making friends with you and would hope that we could all meet in person one day. I hope to have another day doing crafts so I will not be able to meet anymore. I have heard that I may have the opportunity to learn glassmaking, candle making and working with wood. So I am sure you will understand. 7 Thank you so much for respecting me, I did cherish that. I make really great strides knowing what I gained from the group. We discussed future meeting dates. It was agreed that we would now start meeting monthly. Action • Invite suggested guests • Andrew to reply to Charles on behalf of the group • Agree future dates Next meeting: Wednesday 22nd March 2023 12:30pm - 2:30pm https://us06web.zoom.us/j/97471173675C Monthly meetings Wednesday 19th April 2023 Wednesday 31st May 2023 Wednesday 28th June 2023 Wednesday 26th July 2023 Wednesday 23rd August 2023 Wednesday 20th September 2023 Wednesday 18th October 2023 Wednesday 29th November 2023 8 Chris’s artwork 9 10