This is a moan so feel free to scroll because it’s about learning disability & who cares right?

So on Thursday morning I learnt about this. As you can see I was complimentary about the company involved https://twitter.com/mrsnickyclark/status/1293852423228882945?s=21 https://twitter.com/mrsnickyclark/status/1293852423228882945

I was assured that this would be sorted because like everyone Emily has suffered under lockdown. Unlike everyone else however, Emily doesn’t understand why. One by one every one of the very few things Emily has in her life, disappeared.

Her precious holiday was cancelled, her trips to cafes and swimming ended, picnics gone and her Dad and I couldn’t even hug her anymore but limited to waving through the window. None of which she understood, “global pandemic” isn’t on her radar. Then her hair started falling out.

She got a tooth infection which she stoically coped with. Her usual food ran out in the shops, her favourite drinks too, more things she relied on were disappearing but she stood every Thursday and clapped for the “kind doctors & nurses” not really knowing why.

Emily is built to be kind, so being nice is easy.
Then this week a lightning bolt took the last two things she loved. Broadband for noddy videos on YouTube on her laptop & the satellite box with Thomas the Tank Engine shows were fried. A power cut was new but she coped admirably

I rang the disability helpline accessibility number and because Emily isn’t an elderly woman with a panic button, the man dealing with us didn’t think she was a priority. He said we were looking at 31st August for an visit from an engineer and wasn’t able to elevate it.

I explained. I had to explain I ALWAYS have to explain. However he said he would try but didn’t do the one thing he should have done which was to refer this on to the “welfare” team. (I’ve just got off the phone from them after a desperate second attempt, they do understand)

So since Wednesday night Emily hasn’t had the last two things she relies on, the last two things that give her any distraction, de-escalation and joy. Three long and unhappy days with her brilliant support workers doing their best to calm her.

Enily was diagnosed at 3 years old. For twenty years I’ve been persuading, cajoling, pleading & at times, begging the those who populate the system, with the power over her life and happiness, to understand a basic truth about my daughter. Basically that her disability is real

It’s real and she is human. There are a small number of reasonable adjustments she requires to live a life with 10% of the opportunities which the rest of the world demands as a right. Demand and usually gets, that’s not the reality when you’re severely learning disabled.

But tonight after finally being heard in order for my daughter to be helped I phoned her support workers and she’s been sobbing with the overwhelming pain of being learning disabled in a world that doesn’t care. I try not to give in to complaint & hopelessness but tonight, I am

I’m not just sad for her I’m angry because vulnerability is so widely misunderstood & ignored as to be an obscenity. I’m sick of “pot luck” in finding the one kind call handler who gets it. Discrimination against learning disabled people whether by ignorance or intent is standard

Ta for support. I’m serious when I say that @matthancock & this government “for the people” need to focus on learning disabled people even if it’s temporary. Because most of society don’t care. If anyone can think of a way to do this let me know. I’m running empty currently.

BTW - During the election I contacted @MattHancock & @JonAshworth to meet & discuss the reality for learning disabled adults & Carers in the U.K. Matt Hancock said yes the same day & met with me. Jonathan Ashworth eventually agreed after 3 pesters. We have yet to meet with him.