This week, disability rights campaigner and former MP candidate George Baker, who has muscular dystrophy, launched The Disability Union. It aims to bring disabled people together to create a collective voice to help fight for your rights.
As a community publication, Disability Horizons exists to enable disabled people to live the life they choose. That’s why we’re supporting The Disability Union – connecting our communities to ensure disabled people have their basic needs met so that they can achieve their dreams.
Here, Co-founder George explains how he came to form The Disability Union and how it can help you.
We were sat around a table, a bunch of politics nerds, trying to understand how to organise local people to fight for an election we all thought we were going to lose.
The conversation turned to the awful conditions faced by disabled people in the post-austerity world and an acquaintance asked me, “George, what can we do to help disabled people, why are things as bad as they are?”
I sighed, deeply, and thought for a moment. I was very tired and honestly, felt frustrated and even angry. Eventually, I replied, “Being disabled is generally very isolating unless you make friends with other people like you.
Many disabled people, if not most, aren’t aware of why things are so difficult for them. They think that the lack of access to society, the austerity that’s slowly removed our services and benefits, and the negative, even abusive, attitudes of many people in the community is just the way it is.
There are disabled activists doing incredible things. There are organisations and charities, some of which are run by disabled people, who are working to improve things. But, the truth is, we’ve never been truly brought together.
There are millions of us and yet we have one of the smallest voices in society. Our interests are often considered last and, more often than not, they’re even considered irrelevant. We’re seen as castaways; disposable and ineffectual.
Everyone in the room looked at me, shocked. I’m normally a positive person and this wasn’t normal for me. Someone asked, “Does it have to be this way? Is there not a way to solve it?”
Irritated at being asked to solve such a large problem on the spur of the moment, I blurted out, “The people that matter – the policymakers, politicians, doctors, social workers, teachers, media – only listen to one thing, and that’s numbers.
It seems to me that every right we’ve ever won as citizens has only ever come about when a group of people band together to demand a change. It’s not enough to protest, you have to educate people, help people, and stand up for them when no one else will. I suppose we need the equivalent of a trade union for disabled people. A disability union.”
Eyes were staring at me from all angles. “You should do this, you must!” they said, one after another. I hated the idea. I was doing my own thing, I was afraid of taking on such a big responsibility and failing.
That was in October 2019 and this week, on the 9th November, The Disability Union opened to the public after several months of testing with a small number of members.
I’m incredibly thankful that my friends, family, carers and confidants encouraged me to start this journey because now I am convinced that this is what I’m here to do. This is my small contribution to helping disabled people secure the rights they deserve and enjoy the independent, fulfilling lives we all want.
Finally, I’m convinced that this is the only enduring way to secure our future, to protect ourselves from abuse, and to fully integrate ourselves into society so that there is finally nothing about us, without us.
It may be that you understand immediately why this is necessary, but for those who don’t yet see why this is such a powerful vehicle for positive change, let me explain.
Why The Disability Union can make a difference
I am an extremely privileged person. I’ve been brought up in a family that was lucky enough to escape poverty and attain a modest amount of wealth. It’s meant that I’ve grown up grounded and down to earth and yet lucky enough to have more confidence than I probably should do.
As a disabled person, this was a disaster waiting to happen. I had everything given to me on a plate, every accommodation made, and people to fight my corner if I didn’t get it. So entering the adult world on my own for the first time was, to say the least, a shock to the system.
I’m now thirty. I think it’s fair to say that it took me the entirety of my twenties to learn enough of the skills, persistence and doggedness necessary to survive and thrive in a world that isn’t set up for me as a disabled person.
I can’t even imagine how hard it must be for people who are less privileged than me or have a less determined personality.
I used to feel that my ability to get the accommodations, support etc. that I needed was purely down to my exceptional talent and hard work. That was, excuse my French, bullshit.
I live in a family of salespeople and managers, so I learnt early on how to get my point of view across and accepted. I was taught how to make the gatekeepers of our freedom, whether they be social workers, benefits advisors, doctors, whatever… on my side.
What’s more, I’m also lucky enough to live in a well-funded council who are more amenable and able to provide comprehensive care packages etc.
Everyone who is disabled should have the same support, no – better, than I did so that we can get the adaptions and help we need. We can be taught the skills, confidence and assertiveness that we, unfortunately, need to operate in a world that often isn’t set us for us, and often doesn’t understand us.
By helping and supporting each other, by building a real, living community of people who share disability in common, we will be able to lift each other up and lessen the burden of all the extra work that we have to do to get our basic needs met.
Together, with strength in numbers, we can represent ourselves to the people who make decisions about us. We can negotiate, bargain, even demand the services, or even just basic respect, that we deserve.
Together, we can fund an organisation, a community, a family that will allow us to lift each other up and get our voices heard louder and clearer. Never again will we have to rely on other people to speak for us.
Never again will we have to start a petition or campaign from scratch in order to get something changed. We will simply tap into our community. A community that will, over time, give us the influence and power that we need to make our voices heard.
Make no mistake, this is about power. It is about empowering ourselves. It is about empowering our community to be a respected stakeholder in society, rather than an afterthought or tokenistic gesture.
We have a lot to give to society. Supporting disabled people is a net benefit. If we are supported properly, the economy will grow, families will be more cohesive, mental health issues in the general population will decrease and the strain on our public health services will be lessened.
We know how to solve these problems. We know what we need. We have the solutions that everyone in society needs. We have skills, ideas and value of all kinds to contribute. We must build a voice on our own terms, through our own hard work and effort, so that we may take our rightful place as valued members of society.
We all know that inclusion is not just a social justice issue. It is a matter of survival for society. It is imperative to our prosperity, to the health of our morals and the future of humankind.
I believe disabled people have a particular part to play in helping society evolve. It should not be our job to prove why we need to be accepted and supported, but the fact is we live in a world where if we want it, we’re going to have to go and get it.
I started The Disability Union because we all deserve a voice and I know nobody else is going to give us one. We have to make it ourselves. We have to take the reigns, build our own support systems and make noise until we are heard.
We will work constructively where we can, call out injustice wherever we find it, and most importantly, build a real community. A home for all of us. Those of us at The Disability Union are on your side. We have your back from now on. You will never be alone again.
Join us at The Disability Union
I wrote this article because I wanted to speak directly to the disability community. To the real people I want to help, and whose help I need to secure the future we believe is possible.
Disability Horizons was built on its community, connecting together like-minded disabled people who simply want to live the life they choose without barriers.
This is why we’re proud to be partnered together. While Disability Horizons continues to provide lifestyle advice, tips and inspiration, showing society and other disabled people what is possible, The Disability Union will fight for your rights to enable you to live how you want.
Over the coming months, I will write more about our journey as The Disability Union grows and gains momentum
We’ve been operating in a kind of Beta since about August and we’ve already achieved a lot for our members. We’ve stopped evictions, helped people secure appropriate housing, apply successfully for benefits, improve their social care packages, fight discrimination cases and a lot more.
This is not just something people need. It works. We’ve improved material conditions for people and we’re in the process of securing much better formal training so that we can be even more effective.
Since The Disability Union opened to the public on Monday 9th November, we have been blown away by the reception we’ve got. We’ve been on TV, in the newspapers and most importantly, disabled people are joining at a faster rate than I ever expected.
It is humbling for those of us working here and I feel a profound sense of gratitude and responsibility to have the opportunity to do something so worthwhile.
We’ve had some people, understandably, feel unsure about us. It’s a new concept and people are rightfully wary of supporting something new that requires a paid membership and seems to have come out of nowhere. I get it. I understand.
We’re listening and we’re working to prove ourselves and our ideas. I want you to know that we will never stop until disabled people have the voice we need and the respect we deserve in society.
I hope you’ll join us at The Disability Union, and I hope you’ll come to us with all your questions and concerns. We’re stronger together.
By George Baker, Director of The Disability Union
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