Interview with LDE Lifetime Member Jenny Carter

When we launched Learning Disability England we awarded lifetime memberships to 8 self-advocates who had inspired us. We've been interviewing them so you can get to know them better! 

Here's our second interview with Jenny Carter. Jenny is an active self-advocate in Wirral and Director of Together All Are Able. 

One of the reasons Jenny was made a lifetime member of LDE was for her work on social media where she speaks up and uses her platform to really challenge organisations. 

How did you become a self-advocate?

I became a self advocate by doing Partners in Policymaking course.

If you could change one thing that would make life better for people with learning disabilities, what would it be? 

I would make it so that people are treated fairly have the same access to everything that others do.

What needs to happen for people with learning disabilities to have good homes?

More affordable housing and understanding landlords.

What does supported living mean to you?

It means that people have better lives and are able to create and lead their own support with the help they need.

If you could say one thing to all of our member organisations, what would it be? 

Work with and involve people with Learning Disabilities. Support self advocacy and help us to have a life.

What do you think is the biggest challenge for LDE? 

Funding, lack of access to the community support and communication.

What are your hopes for LDE? 

That we are able to lead and create our own support so we can have a good life.

What’s your advice to other self-advocates who want to speak up?

Keep speaking up, work with us and don't have a go at each other.

Tell us about a time when you’ve spoken up and something has changed.

The service model for the Wirral and Cheshire delivery hub (which is part of Transforming Care) is now being co-produced with us.

Interview with Shaun Webster MBE

When we launched Learning Disability England we awarded lifetime memberships to 8 self-advocates who had inspired us. We've been interviewing them so we can get to know them better! 

Here's our first interview with Shaun Webster MBE, International Project Worker at CHANGE. 

Shaun at Conservative Party Conference in 2014 (with Gary in the background!) 

How did you become a self-advocate?

Before I because a self-advocate I was working in another job and my friend told me that there was a job going at CHANGE. Because I live in a KeyRing network I had experience promoting KeyRing to different people. Because I had experience doing that, that helped me to get the job at CHANGE.

If you could change one thing that would make life better for people with learning disabilities, what would it be? 

Attitudes. Because some people and the media think people with learning disabilities are lazy or spongers but we’re not. We’re hard-working people and we want the opportunity to have a job like everybody else. And I think people with learning disabilities should maybe go to schools and talk about themselves – we’re just people like everybody else. We’ve got jobs, we’re living on our own, we’re part of the community. We’re human beings just like you – we’re not different. 

What needs to happen for people with learning disabilities to have good homes?

What we need is a choice of what home we get. We need to be included in deciding what kind of home we want, where we want to live – because we want to have a choice. If you’ve got different disability needs or need support then you need these things to help you live independently.

If you need support workers you need the opportunity to choose your support worker and they need to listen to you and make sure you’re included in everything. 

What does supported living mean to you?

I live in a KeyRing network. I’ve been living with KeyRing for over 15 years. At first I had a lot of support. I used to live in a flat before that – my brother used to live with me but he did everything for me. My brother wasn’t being bad; he just thought I would struggle with things. Moving to KeyRing was a big change. I wasn’t very independent and what changed that was a fantastic support worker who did an action plan for me about things I needed support on. Over time I became more confident in doing them for myself. Then I supported other people to do these things when they moved into KeyRing, like peer support.  And then the people I supported could support me too! It was a win win! 

I’m supported on my terms. When I need support I get it and when I don’t I don’t 

Why do you think it’s important for people with learning disabilities, families and organisations to work together? 

I think it’s very important to include families because I feel sometimes families get left out. Families need to know what’s happening so they can support people. But sometimes they get forgotten. 

If you could say one thing to all of our member organisations, what would it be? 

The one thing is always include people with learning disabilities. Make sure people with learning disabilities are employed and make sure they are in control. And not just that, make sure they are living independently and have control over their lives. Companies need to think about that. 

Employment and living independently are linked together. Being employed gives you power. And when people are employed and live independently they can inspire other. 

What do you think is the biggest challenge for LDE? 

There are two actually. Attitudes and money. Attitudes and funding can make it difficult for people with learning disabilities to live independently and be employed. 

What are your hopes for LDE? 

My hopes are people with learning disabilities will be able to be more a part of the community, be treated the same, be respected and to get proper paid jobs, not tokenistic jobs. 

I think schools need to take people with learning disabilities more seriously if people with learning disabilities are going to achieve decent jobs. Schools don’t ask people with learning disabilities what jobs they want. I think people like myself who have jobs could go into schools and talk about that. Be role models.

Another barrier is the media. I hope LDE can show the media that people with learning disabilities are not benefit scroungers. We want people to stop feeling sorry for us. 

 What’s your advice to other self-advocates who want to speak up?

I’m doing a project at the moment about mentoring. Mentoring is to improve people with learning disabilities’ confidence in speaking up for themselves. People should think about doing mentoring – it will give people like myself a real opportunity to speak up. It builds their confidence, self-belief, gives them a voice and helps them to be a part of the workplace.

Tell us about a time when you’ve spoken up and something has changed.

I was in London earlier this year and I had a meeting with chemists – I did a talk about having a bad experience with chemists. When I went to pick up my medication it was new and I couldn’t read the information. I asked the person at the desk to read the info for me and they said no. they were very rude to me and I had to go and see the nurse. 

I talked about at this meeting about making information more accessible for people with learning disabilities and I felt this made a difference. When I use my life experience it breaks down barriers. And then people do take notice.

Conservative Party Conference

This year representatives from Learning Disability England attended Labour and Conservative party conferences. You can read our thoughts on Labour conference here. 

We asked Gary, Sheila and Harry to talk a bit about their experiences of Conservative Party Conference. Here's what they said!

Gary Bourlet - self-advocate representative

It was good that people with Learning Disabilities and parent representatives where there. There were also two academic students who attended the conference with us.

I've been to these party political conferences before. We had good meetings with Dominic Grieve QC and Liberty - they knew all the legal stuff, especially on things like Human and Civil rights.

The down side was that when we went to fringe meetings it was hard to get a word in edge ways.

There was a lot of questions I wanted answers to, there never seemed to be enough time though, and sometimes the panel did not really take on my questions. It would have been great to have more people with learning disabilities and families at these party political conferences - it would be great to be there big in numbers.

I have already been to 1 Labour and 2 Conservative conferences in two years. In the future I would love to go to the other minority party conferences as this will give me an idea what they are saying about people with Learning Disabilities.

Sheila Moorcroft - family carer representative 

I am a family member of LDE and part of LDE’s steering group. This was my first ever party conference – I went to the Tory party conference.

The overriding impression was the sheer scale of the event: the numbers of people, the numbers of fringe events over and above the main political speeches. Annie at LDE had very kindly pointed out a few meetings that would be relevant for us to attend, and set up meetings with specific people; otherwise we would have faced a mammoth task sifting through the options. It made me realise just how difficult it must be to make your way in politics, and navigate the system. And the energy and stamina that you need.

The meeting we had with Liberty was perhaps the stand out moment. It provided an important starting point for new opportunities to work together, and potentially raise important issues such as the care, or lack of it, of people with learning difficulties in the NHS, as illustrated by the recent events at Southern Health.

I certainly think that it is important for LDE to be represented and would encourage family members and self-advocates to go to the party conferences; but those unused to networking and talking to strangers perhaps need more help and preparation. We also often found ourselves in fringe meetings talking with people who already knew and understood many of the issues facing people with Learning Difficulties; getting the message across to a wider audience is more difficult. Simply asking a single question in a meeting is not enough; it felt much more effective when we were able to talk one on one with people at the end of sessions.

Harry Hayton-Isles - student volunteer

Earlier this month I was lucky enough to attend the Tory Conference with LDE. It was a fascinating insight into a political culture I've had very little experience with and despite drawing some worrying conclusions from the experience, I highly recommend any other students to take part. The first thing that struck me is the divisions in the party on the subjects of disability and social care. There was a distinct feeling amongst representatives of local government that the cuts to services and current set of welfare assessments were failing families and people with disabilities. Even going as far as to refer to the cabinet, and other Westminster conservatives, as if they were from a different party entirely. I found this a particularly interesting representation of the under reported tensions in the party, while also presenting a far less black and white ideological image than I had imagined previously.

Having said that, this does seem to raise a bit of a paradox in that while the cuts are not supported, seemingly neither is real investment in services. Furthermore  there seemed often to be a hushed reference to privatisation as a way of solving this, something that has a track record of continually not solving these problems. But there are some real champions surrounding disability, our meetings Dominic Grieve and Ian Birrell showed this. But there still seems to be a lack of interest on a cross party basis, stopping real change from manifesting. MP's rarely turned up to the panels we attended, notably Jeremy Hunt not turning up to any.  This gave the proceedings outside of our personal meetings, a kind of hollowness that fundamentally gave the impression that whatever panel members feelings on the issues, the real decisions would be made elsewhere. This was a stark difference from the kind of engagement we found at the Labour conference from both MPs and Shadow Cabinet.

Another key difference I found was the serious lack of self-advocates, people with disabilities and families at the conference. People who should be an integral part of formulating policy and discussing issues. This lack of dialogue is something I found very worrying considering how much work is needed on the current policy presented by the party.  What is worth mentioning as well, is a great meeting we had with Liberty who seemed keen to engage with a number of issues concerning the treatment of people with learning disabilities. I thoroughly recommend any students to get involve in future as it was great opportunity, an exciting inside look on politics at it's most extravagant. Although I think Ben mentioned this, it is worth reiterating how helpful having a focus and purpose is in such a huge event.  Subsequently this also educated me on the importance of the work LDE does and I hope to get involved again.

Thanks to Annie, Alicia, Sheila, Sui-Ling, Martin, Paula, Gary and everyone at LDE. Had a great time!

Labour Party Conference

This year representatives from Learning Disability England attended Labour and Conservative party conferences. We wanted to go because we think that it's important for people with learning disabilities and their families to be involved in political discussions and decision-making. As a campaigning organisation, we wanted to get a feel for the conferences and work out how we can get the most out of them in the future. 

We sent a self-advocate representative, a family representative and a member of staff to each conference. We also had two student volunteers with us which we found really exciting. Politics students are going to be the politicians of tomorrow and we think it's really important to get them engaged in learning disability rights activism. 

We asked Sui-Ling, Paula and Ben to talk a bit about their experiences of Labour Conference. Here's what they said:

Sui-Ling Tang, self-advocate representative 

How was the conference for you as a self-advocate?

“It was the first conference I have been to. It was really good but they were very long days with lots of meetings.”

What was the best bit?

“My chat with Debbie Abrahams.”

Were there any challenges or any bits you found frustrating?

“Going to different places to meet everyone. It was difficult to understand what people were talking about. I would like to see Easy Read information available, that would be really good.”

Would you encourage other self-advocates to go?

“ Yes, people have some great ideas they could share.”

Why do you think it's important for LDE to attend the conferences?

“It is important for people to speak up and for people with a learning disability to be heard.”

Paula Edmondson, family carer representative 

Being the Family representative for LDE at the Labour Party Conference was such a great opportunity in so many ways: I was really pleased to have been asked and that I said yes! 

As a group we worked out the best places and meetings for us to be and the most relevant questions and points that needed to be asked and made - then we set about doing just that.

Intriguingly, the thing that stands out for me the most, is how different it feels to raise issues of massive concern with politicians than it does to try doing the very same with paid people operating within our health and social care systems. With no apparent need to build walls of defence, I was able to enjoy, at the very least, feeling as though we had been listened to with some level of respect by people who may (or may not) at some point in the future, be able to participate in making a positive difference as a result of what they heard.  One can hope eh?

Certainly none of us in the LDE group held back from joining in- we did ourselves very proud indeed!  And we can definitely be assured that we made a memorable impression with some  - for as I paid for my parking ticket Wednesday afternoon I was cheerfully greeted by Debbie Abrahams busy on her way to the closing speeches. But not too busy to stop and say ‘Hi Paula: it was really good to meet you, Suiling and the rest of the group and I hope all goes well for you!’ 

Ben Leonard, student volunteer 

At the end of September, I attended the Labour Party conference with Learning Disability England as a student volunteer. The media coverage of the conference was almost entirely focussed on the faction fighting within the party. However, as an LDE volunteer attending fringe events with a focus on health and social care, what struck me was the number of hard-working, passionate and inspirational campaigners who have been fighting some of the most difficult struggles there is for decades, coming together to work out how to change society for the better.

For me, the best bits were the Disability Labour fringe, the Socialist Health Association fringe and the Autism and Neurodiversity Manifesto Launch. What was special about these was the emphasis placed on centering the experiences and ideas of those who are most affected by government policy: people with disabilities, their carers, and professionals in the sector. It was also pleasing how the Shadow Ministers seemed to care even when the cameras weren’t running. For example, John McDonnell took time out of his day to travel away from the conference centre to appear at the unglamorous Autism and Neurodiversity Manifesto Launch on the hectic last day of the conference, not long before the Leader’s speech. Debbie Abrahams is also worth a mention, for taking the time to meet LDE and then pledging the next day to scrap the Work Capability Assessments.

What was frustrating was the disconnect between the passionate and principled campaigners we were speaking with, and the suited and booted party machinery at the conference centre. One wonders how the energies and policies of the people at the grassroots can be translated into policy at the level of government, when many seemed more interested in networking and fighting internal battles than anything else.

I would encourage any Politics student to volunteer at a party conference with LDE if they get the chance. Not only do you get to be in the thick of it for a week, going with LDE means you go with a focus and a purpose. If I had gone as an individual, a party member or a journalist, I would have never got the in-depth insight into how a specific area of policy works in and around a party that I got by going with LDE.