Read our latest News
Dear Friends and Supporters,
As the season turns to light and growth, I’d like to highlight the work we have been doing with Entelechy Arts to help raise the voice of people with profound and multiple disabilities. We’ve been working with Entelechy on their Ambient Jam sessions and inviting decision makers to attend and to experience the world in a different way. You can read more about that in our self-advocacy update below.
As Lewisham Speaking Up staff members we also get to go along, and you can read what Jan our community 1-2-1 advocate thought about her experience below. I’ve been a couple of times myself and I would thoroughly recommend it!
Lots of disabled people are very worried about the changes that are being proposed to disability and other benefits right now. There is concern about how people with disabilities are being portrayed as a burden on society. We are waiting to see exactly what changes will be made and we will be supporting people to have their say on this important topic. It is also important to remember that a lot of benefits can change when a person with learning disability reaches retirement age. You can read more about that below from Michelle, our 1-2-1 finance advocate.
In January we held our first ever Question Time event with Lewisham MPs. The idea for the event came from a person with a learning disability at one of our People’s Parliaments and we were pleased to be able to put his suggestion into practice. We were delighted to be able to get all three of our local MPs to join our event and we would like to thank Vicky Foxcroft, Janet Daby and Ellie Reeves for attending. As Vicky said, ‘you guys never fail to ask the tough questions that need to be asked.’
Rest assured, we will continue to ask tough questions and support people with learning disabilities to stand up for their rights.
We’re walking again! Following our successful Sponsored Walk last year, we will celebrate our 20th anniversary year while raising funds by walking 20 laps around a course in Ladywell Park on Saturday 17 May.
If you’d like to sponsor Marsh or Ilse, please click on their names. Alternatively your donation would be very much appreciated as it will all go towards supporting our services. Fingers crossed for balmy weather!
Marsh Stitchman, Director
Self-Advocacy
People’s Parliament
Our first People’s parliament of the year was about Money and Benefits.
We were joined by Jane Easter from Forest Hill Job Centre, who spoke with our money management advocate Michelle about the changes to benefits. People asked questions about PIP, Universal Credit migration and pensions. After that, Michael and Noah from South East London Community Energy talked to us about how their organisation can help people manage energy bills.
We had 3 workshops on the cost of living, benefits and scams. People shared what support they need as things change, and as the cost of living stays high and scams are getting more advanced.
Parliament Visit
On Thursday 13th March we went to the Houses of Parliament! The Challenging Behaviour Foundation invited us to their “What Matters To Me” launch event. They worked with young people with profound and multiple learning disabilities or severe learning disabilities, to put together a multimedia manifesto about transitions. We learnt lots of ways that people with PMLD can share their view, and be involved in making decisions that affect them.
Question Time
We held a special Question Time event where people with learning disabilities in our community got to talk directly to their local Members of Parliament (MPs). We thought it was important for everyone to share their experiences and ask questions about things that matter most to them, like getting help from GPs, finding good homes, getting jobs, and having fun things to do. We heard some really important stories about how things aren’t always fair or easy, and how sometimes people have to wait a long time for help.
We can't wait
Our reps team have been working with My Life My Choice on their We Can’t Wait campaign. We want people with learning disabilities to be prioritised on NHS waiting lists, to stop them from dying before their time. Too many people with learning disabilities don’t get the support they need, and it means that people with learning disabilities have a lower life expectancy of only 53 years old.
We spoke to the South East London Complex Care and Learning Disabilities team, and the South East London LeDeR steering group, who want to help us make this happen.
We also went to visit the Queen Elizabeth’s Hospital, and gave them feedback on their accessibility. They showed us their new signs that include clearer words and symbols, their plans to colour code the hospital, and their new Easy Read letters. Now, anyone can ask for Easy Read letters from the hospital and they will get them!
We will be using everything we learnt as part of our partnership with Entelechy Arts. We’ve been inviting important decision makers to come to Ambient Jam sessions. They are improvisation sessions for people with PMLD, and dancers and musicians. We want decision makers to learn how to work with people with PMLD and involve them in decisions and policies.
1-2-1 Advocacy
Jan's Ambient Jam Experience!
I would like to share a new experience with you – attending the Ambient Jam session run by Entelechy Arts. I was told the people attending have profound & multiple learning disabilities (PMLD) with either difficulty in seeing or hearing, not being able to communicate verbally, and maybe wheelchair users.
Lewisham Speaking Up has been working with Entelechy Arts to look at how the voices of people with PMLD can get involved in self-advocacy and have more effect on policy. To help with this we have been inviting decision makers to join Ambient Jam sessions. As a member of Lewisham Speaking Up staff, I also had the opportunity to go. I was curious and it would be an opportunity to have a new experience, learn new skills and absorb some knowledge.
When Ellie (my colleague) and I arrived, Gill, the host, Entelechy artists and dancers greeted us. Gill made us make a circle and hold hands to warm up and explore one another by touch. Not wanting to be seen as a wallflower or an observer, I joined in exploring touching each other’s hands, elbows and shoulders. Not saying a word, one dance student engaged in a back-to-back exercise with me. In others words she put her weight on my back to see if I was strong enough to hold her up, which I did. (Guys, I need to go to the gym!).
At this point, I noticed the service users arriving inside the hall with their carers. Some of the service users were guided to sit on mats, chairs, beanbags, or stand using a table to guide them and support their weight.
Then I heard the staff playing music: a hand drum, an accordion and ocean drums. Some of them started jumping, dancing, posing like ballerinas & making loud sounds by using vowels. This in turn stimulated some service users to shout. All the while staff encouraged and guided the service users to participate in movement. Some responded positively, others were quiet.
Although I’m shy, I decided to join in the dance. I call it ‘Caribbean free style moves’! Moving around the hall playing my tambourine and quietly chanting to myself ‘yo, yo, yo, yo’ as I was dancing, I caught sight of Ellie smiling and staring at me in disbelief. I continued dancing taking special care not to bump into any of the energetic dancers. When the music stopped, I sat down on the mat and gently engaged with one of the service users by touching their hand. They immediately responded by touching my hands and arms. Then I went to another service user and tried to shake their hand. They shook my hand and then pushed it away.
The music started playing again; I got up and started dancing around the hall, whilst looking for another instrument to play. I wore a wooden bracelet with large wooden beads on my wrist that made a lot of noise when I shook my hand. I started dancing around the hall and noticed a service user holding the table, but not participating. I went towards him, touched his hands gently, and closed my eyes for a few minutes to experience his world of touch and sound. However, he made a firm noise that I interpreted to be ‘leave me alone’. I quickly moved away respecting his space and privacy.
I went and looked for some props and found a fan and silk material. I saw another service user sitting on a beanbag and I started to fan their head and face. They appeared to enjoy it.
Then the music started again but at a faster pace, (I really need to join a gym!). I jumped up started dancing around the hall quickly playing the hand drum, intermittently fanning anybody and everybody and using my silk material to engage with the service users. The music got faster and faster, I swear I must have danced around that hall a hundred times. Then it stopped and I sat down thanking God. Once again it started, stopped, started, stopped, started and stopped. Everyone fell to the floor smiling and laughing loudly. I waited to see if the music would start again, but heard nothing but laughter. I asked Ellie if it was finished now. She smiled and said we have to stay for a debrief (our feelings about the session).
For me the Ambient Jam was like entering a new world of individuals who relied on sensory stimulation by caring members of society. I engaged in that new world with the service users by using touch, music, and material as a stimulus. I soon acknowledged that a gentle touch and some attention could mean so much. Whereas, others made it clear that they did not wish to engage, and so I had to respect their wishes. My experience was a spectrum of freedom, non-judgemental, unrehearsed, flowing, beautiful, and be-true-to-yourself experience. The session’s taught me to be bold, to be intuitive, to be a free spirit and live in the moment. Spoken words can be lyrical and poetical, but no words can also be magical, sometimes enigmatic, but just as decisive and strong.
If you guys get an invitation to attend, take it. It is both an individual and united experience filled with joy, consciousness and inspiration.
Michelle's Comments on Pensions
There are quite a few LSU participants who will be pension age soon!
We can advocate for you with applying for your pension.
Phone Michelle on 07565 280 157 if you would like more information or support.
Contact
Please attach a completed referral form for all referral emails.
