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Political silence. The one thing you would not expect in the charity sector, especially in an era when disability is being ground deeper and sadly further into the dirt by an ableist and unwilling to listen Government. But it is there, and why you might ask. Well, in 2016, new conditions were put into place for charities. Grants from central Government departments came with a hefty price. The price being that those charities were not able to use said grants for “activity intended to influence – or attempt to influence – Parliament, Government or political parties” This amounted to a virtual gagging clause for charities who applied, who were desperate for funds to survive and to carry on assisting people. Recipient organisations were now basically, blackmailed into appeasement. The only silver lining was that charities who used privately-raised funds to campaign could be as political as they like, however, these were often smaller charities with little voice and even less weight. It appeared the administration was telling the charity sector that honest and truthful criticism was something they were not prepared to tolerate.

I am fiercely political in my work. As a parent with a hidden disability, caring for a 14-year-old child with a physical disability, I fail to see how anyone in a similar situation cannot be politically driven. I see both sides of the spectrum as a carer and a disabled person. To see charities locked into this impasse of frustrated silence infuriates me and no doubt the hard-working and caring people within them. Having a political voice is imperative to me. Working deep within the disabled and care community I witness the apparent state-sanctioned desperation of so many families. In times I often turned disabled people and carers to the charity sector, but the charity will is now blunted and so help is not as effective as it should be. I’m not angry at them, I’m angry for them. As Covid bites down especially hard on both of us, carers and disabled individuals alike, the ability to show rage, and hold those partially responsible for the charge of the pandemic, has been limited to whatever safe criticism the charity is allowed to show. It’s almost like a dictatorship, you do what we say of you go under and all those who rely on your services suffer.

Charity is now in a bind, a conflicting situation. What was now needed was to have something fighting back at the equipment manufacturers’ horrendous prices, the legislators of grossly unfair and ableist laws, and the apathy of the governing politicians towards us all. Something that let frustrated people vent their fury and let it ride, something that would fight for what is right for both groups collectively. There needed to be somewhere specific that would not be prevented from tugging on the coattails of the power makers and prodding them in the chest. A counterpoint was needed to the great but now limited charities’ spirit, the anti-matter to their matter, a yang to their ying, in other words, a union.

When people think of unions they assume they’re all about strikes, no. Union means the action of joining together or the fact of being joined together, especially in a political context” and this is exactly what I discovered in the Disability Union. Formed last year by activist and wheelchair user George Baker, this union simply wants to change the status quo through words and positive and peaceful activism. This fresh and unique collection of disabled people and carers is not afraid to say to the state “This is wrong, this stops, now.” Its focus is on people and issues that the charities can’t afford to step into for fear of funding withdrawal. George and his small team are not afraid of making a stand and the entire union is run by disabled people and run for its members and followers.

Now, this is not just an advert for George and his dream of mass unity, this is about frustrated and angry people finding their place, finding that much-needed outlet for the pain and frustration that they have held in their hearts and minds as the system continues to shout them down. For me, I  have found a home that challenges political decision-making and supports people with the voice of lived experience. The UK’s 17 million disabled people and its 1million plus carers are encouraged, with the unions support, to kick back unimpeded, unprejudiced, and to amplify through a collective voice the simmering frustrations that affect them on a daily basis. In other words, stir the hornet’s nest of inequality but with the union putting the boot in first.

This is not playing charity off against union, no, both are obviously needed in a country that still sees disability as a non-productive or on-contributing capitalist entity,  but only one can kick against the pricks. Like the Union, there are similar groups online, but the division is seemingly rife with care and disabled groups separate, sniping at each other which is odd considering we are all looking for the same thing, total equality. If we are not united we fall apart, we get nowhere, the squabbling has to stop, the unity has to begin, so begin it in an organisation like the Disability Union. 

All I am trying to say is please, please support your charity, they are needed, staffed by passionate and probably equally frustrated people. However don’t think they can rattle the locks of Government and demand the changes, that’s where a unity of people comes in. Unions can be the channels of your frustrations where you can meet like-minded people and talk to the teams about issues outside of white goods and wheelchair spares. 

In an ideal world, we would not need charity, but capitalism decrees that we must. There has to be a pecking order of equality apparently, with us at the bottom and the cruelest at the top. So until equality is an established precedent, unions must always be there, being the counterpoint, the angry sibling of the charity. We all need help but we also have rights, the right to demand as well as the right to have support. We all must and need to work together politically, carers and disabled people, it just makes progressive sense. 

So if you are left with anything from this piece, I hope it’s a desire to seek out a union like the Disability Union, so that your burning frustration finds kinship and release. I’ve joined and the word is spreading, people are wanting to be heard, not just given hyperbole. How do I know this to be true? I asked George.

“There are lots of people who speak for us, but no real living community of us and by us. That’s what The Disability Union is for. We’re here for the disability community and their carers. Together we will be much harder to ignore. By working together we will win the rights, support, and inclusion we deserve. We’d be honored if you’d join us. We’ll support you every step of the way.”

Do you see? We are more than just charity cases.

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