During this time of isolation, we’re mostly dealing with either the minutiae of shall we have a cup of tea or the big things like, will we be able to pay our mortgage. I’m personally trying not to lose it when my children say “Mum, Mum, Mum, Mum, Mum” 3,000 times a day and thats each child. This is the type of day to day stuff going on in houses around the country and the world, every day, at the moment.

On the other hand, there are members of our community who are suffering incredible hardship, illness, violence and mental health problems. The challenges are wide and varied. It can be a very frightening time.

I always try to look at the positives though. For us, we’re all currently well, we’re lucky to have a garden and the sun has been shining and I’ve managed to watch all three High School Musical films with my daughter. Hurrah. Plus, importantly, we have enough food to feed our three children and we have a brilliant dog who gives endless love and entertainment.

Our Big Win of The Week

Our big win this week, which may seem tiny to some, is that Freddie washed his hands. This is a child who has sensory processing issues and hates soap. The texture repulses him and he makes it known every time, in a BIG way. One of our big Covid-19 challenges has been getting our son to wash his hands regularly when he HATES it. He actually went to the bathroom and washed them without being asked. Soap and everything. It’s only happened once, but that’s a big win for us.

SN Fears During The Pandemic

Then, there is the utter shock that someone is able to make life changing decisions on behalf of some of the most vulnerable members of our society, without consultation.

I haven’t been able to stop thinking about the news article I read this week from BBC news. It stated that a number of residential care homes, which look after adults (mostly working age adults) with Autism, were sent letters. The letters advised them to put a DO NOT RESUSCITATE rule in place for the people who live there should they become seriously ill. I mean, WTAF? I’ve since read articles reporting that parents have received letters from their GPs asking them to sign them for their children too. The horror.

Our Fear, as a community of parents of kiddos with SN and disabilities isn’t just about shielding, protection and worry over our most vulnerable from a health perspective. It’s now also the fear that our children may not receive the healthcare they need to save their life. All because someone has deemed them to be of less value to society.

Those People With Brown Eyes Are of More Value To Society

Can you imagine the outcry if letters had been sent to all hospitals, giving the order to place a DNR on all men with blue eyes?

In 1992, in the wake of the Los Angeles riots, a memorable episode of Oprah aired. An experiment was taking place and no-one in the audience knew they were a part of it. This experiment was actually to highlight racism, not disability, but for me the message is the same. The experiment caused rational people to believe that people with blue eyes were of less value than those with brown. This is, of course, ridiculous. Just like the idea that having a disability means you are of less value to society and as a human being than those of us who do not.

Moral Compass

Fast forward 15, 20 or 25 years time, this could be Freddie. It’s likely we won’t outlive him and it’s pretty much my biggest fear and worry. He will need to live somewhere safe, where he can be supported. The thought that if this were happening in the future, it could be us, is too just too much. The fact it’s happening in the here and now and affecting families like ours, is abhorrent.

Who has the right to decide the value and importance of another human beings life?

Where is their moral compass? Do they have one?

Advocacy is Needed Now, More Than Ever!

We already have to advocate for our children and young people with special needs and disabilities above and beyond the typical parent. As recent at the 1970’s, many children with physical and cognitive disabilities would have been institutionalised or unable to be part of a typical school setting. We’ve come a long way in the past thirty to forty years. But we still have an incredibly long way to go. This article has just pushed the advances of inclusion and acceptance back decades.

We must stand together and advocate like never before.

Celebration of Inclusion and Acceptance

On more of a high note. Inclusion, diversity and acceptance can be seen. For anyone who didn’t see Saturday’s episode of Britains Got Talent, click below to watch it. We need to see so much more of this.

“I’m Not Scared To Be Seen. I Make No Apology. This Is Me” Jade and Christian’s message couldn’t have come at a better time. Follow Jade and Christian, Sign Along With Us, on their Facebook page. Emotional and brilliant. Jade is a true advocate.

Until next week. xx


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