"The Future is Accessible" - Working towards an accessible future is everyone’s responsibility but we need disabled leaders to make sure it happens.

Disability and Leadership

Banner Image - Steve and Ann Marie with bemix Chief Executive, Matt Clifton

by Steve Chapman - bemix Co-Chair, Jobs Champion, Music and Arts Supporter and Self-Advocate with a learning difficulty 

and Ann Marie Lillis - bemix Non-Executive Director, Discovery Catering Supporter and Expert by Experience with Asperger's

Steve - For me, being a leader means mentoring and supporting other people to lead and speak up for themselves.  I've been campaigning for change for 18 years now. When I retire, someone else can then take over my role. 
I work to change people's attitudes towards learning disability.  I support people to understand what it is like to have a learning difficulty and what they can do to be more inclusive and accessible.

Ann Marie - Being a leader means I can have a say and speak up for myself and other people with learning difficulties or autism.  This is so important as it means people can be heard and be seen.
I have used my voice as a leader to become a self-advocate; I am a panel member for Care and Treatment Reviews and use my own experience of having a learning difficulty and Asperger's to understand how people in care want to be treated.  I also deliver training inside bemix on how we work, as well as to student midwives on how parents with a learning difficulty should be supported.

Steve - It feels like we have to work very hard to be seen and heard but it should be the other way round!  Local government, statutory services, employers and the whole community should be working to make sure we are included. In an ideal world, we shouldn't need organisations like bemix.  Everyone should be seen, be heard and belong in community without us campaigning for it.
We have to work very hard to be seen and heard in society, but it should be the other way round!  Local government, statutory services, employers and the whole community should be working to make sure we are included.
It is very important that people with learning difficulties and/or autism are leaders. Then we can change things in society (e.g. in government). We don't want to just be in the background.
I use my influence as a leader in several areas of work.  I am a member of the Kent Partnership Board.  Recently we led on developing Six Big Questions to put to local authorities in response to the abuse at Whorlton Hall.

I am on the 'What I Do' group where I work to get people involved and be heard in the community.  We invite guests to talk to us about what they do.  Most recently, the representatives from the Job Centre came to talk about Universal Credit. We already knew most of the information they told us, but it was a good opportunity to raise our concerns about Universal Credit: that many people can't apply online as they don't have computers or the internet; not everyone has a regular advocate or family member to support them to go to their local Job Centre instead.  

Our voice can only have so much influence at that local level, so I also lead projects that can influence national decisions.  We are currently organising the Canterbury Question Time (hustings).  The event will give people the chance to ask questions of the 3 main election candidates.  We know that many people with learning difficulties and/or autism, or other disabilities, often do not vote.  Yet they are some of the groups most affected by government decisions.  We are prioritising the attendance of disabled groups at the Question Time to make sure that it is accessible. 

The International Day of Persons with Disabilities exists to make sure that environmental and social barriers are identified, and to help everyone to work together to overcome them.   Some of the most disabling barriers at the moment are:

Steve - 
Public TransportIn the 18 years that I have been doing this work, people are still finding transport a barrier to getting to work, meetings and hospital appointments.  Hopefully, through our work with the Partnership Board, people will be able to use their bus passes at any time, not just after 9.30am.

Housing - More accessible, social housing is needed. At the moment, if something happens to someone that means they can't access their own home, e.g. they need to use a wheelchair, they are often being moved home rather than having adaptations in their own home.

Ann Marie - 
Personalised care - People are still having decisions about their lives and care made for them.  People should be at the centre of decisions around their care, support and lives.

More disabled leaders - We need more people with difficulties, disabilities and autism in leadership roles in organisations.  

Working towards an accessible future is everyone’s responsibility.  What can we do to achieve this?

Steve - Talk to people with learning difficulties, autism or disabilities.  We're not scary - we just want to be part of the community, working, having relationships and live like everyone else!  Don't believe everything the media says.

Ann Marie - Listen to us and see us; we have valuable experiences, skills and opinions and we belong in society, too.
Pictured - Steve Chapman (right) with our Self-Advocacy Team

Language and Accessibility

We spend a lot of time thinking about and discussing the language we use in bemix.  How it has the power to shape the way we think about people and the work we do.  We think this is so important that we created a bemix Language Guide with our fellow language enthusiasts at Moka Pot Copy.  It is a work in progress - our thoughts and feelings about language and identity change all the time, so we need to keep having the conversation.  Add your thoughts to the comments below.

In the Guide, you will find the following comments on the words we use to describe us:
"People First or Identity First Language

When we talk about people with a learning difficulty, we use ‘people first’ language (rather than using a condition or a trait as a label or defining attribute, we speak about it as something a person has). For example, we would say ‘we are people with a learning difficulty’ rather than ‘we are learning disabled adults’. This is because we find learning difficult, but if we are given the right support and opportunities, we are not disabled by this difficulty.

When we talk about people who have an Autistic Spectrum Condition, we might say “we have autism” but we might also say “we are autistic”. People have different opinions on what they prefer. Whenever we are talking about an individual, if unsure, we should ask them how they identify and what language they prefer. We should encourage discussion about this as this will help us understand what people prefer or find offensive.
Often, people are scared to “get it wrong” or offend people with their language."  The easy way around this is to just ask us.

We also agree with people behind the International Day of People with Disabilities (IDPWD) on Tuesday 3rd December who believe "a person is not inherently ‘disabled’…disability is NOT a feature of a person.  We say that people have health impairments: some of us need wheelchairs to mobilise; some of us need seeing-eye dogs; some of us need assistive technology – just like some of us need glasses to read; or medication to manage pain; or an inhaler to manage asthma." 

It is not these impairments that disable us, it is the barriers to accessibility in society and our environment.

"I'm very proud to have a learning difficulty. There is only one person like me and why should I hide away because I've got a learning difficulty. People can do whatever they want if they get the right support and information" - Steve, Director, Supporter and Jobs Champion