Lockdown means I can't be there for my brother, but thankfully his carers are

As I stood outside my house in Cardiff to clap for our NHS heroes along with millions of others, the impact of everything that is happening really hit me.

We are in this for the long haul and it isn’t soldiers on the frontline, it’s our brave doctors, nurses, NHS staff, support workers and carers.

My thoughts were also with my brother, Adam, who is severely autistic and has a learning disability.

I recognise now, more than ever, how much our support workers are needed when we can’t be there for our disabled brothers and sisters. 

Before the lockdown was announced, I got a call from my dad who told me that I couldn’t go and see Adam as my brother’s care home was being closed to visitors to stop the spread of coronavirus.

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Unlike many others separated from their loved ones, I can’t just call him on FaceTime because he wouldn’t understand how to use the technology, nor have the attention span for it. 

Me being there in person is the most important thing to Adam. We can’t do much together but it’s the quality time that matters – we play games and run about.

Many people find this brotherly relationship hard to understand, but for me it’s lovingly normal. 

While for others it might be about Playstation or heading down the rugby club for a kick about, for me it’s just about enjoying Adam’s uniqueness.

I remember when we were visiting a museum as kids, my brother took the tube from a hoover that was laying around (he loves playing with things like that) and we had to explain he has a learning disability and is autistic to the staff who totally understood.

Was I embarrassed? Absolutely not – that’s what he’s like and he’s the one and only Adam for that reason. 

So, today, on the strangest of National Siblings days, the freedom to see my brother is one I don’t have.

I last saw him a few months ago, and I was supposed to see him during March, but all of this happened so quickly and nobody could have guessed the situation we find ourselves in. 

He doesn’t have family around, and that is stressful for me – but he does have his amazing support workers who are looking after him day in, day out.

Family is everything, but as long as he’s receiving the best possible care, my mind is at ease. 

It’s a worry he may catch coronavirus, but I know his care home, Perthyn, are taking all necessary steps to minimise the risk of infection. 

In the background, the care home has undoubtedly had to drastically alter the way it is providing care and take all the necessary steps to minimise the risk of infection.

In my experience, support workers overcome the worst odds to provide heartfelt care.

They are the ones going into work every day to help the people they support adjust to a new way of life, while many of us are lucky enough to stay at home.

I worry about how confusing a time this must seem like to Adam. Things are changing at an overwhelming pace for many of us, but it can be even harder for the 1.5million people with a learning disability who may need support to understand difficult information.

Just like everyone else, my brother deserves to know as much as he can.

Luckily for Adam, the support service where he lives hasn’t changed drastically and he can continue to go about his daily routine. His support workers are also doing everything they can to help him live his life as normally as possible and, with the good weather, he’s even been able to get out into the garden.

While this crisis is having an effect on us all, I wish people would think of people with a disability who may have already been struggling and are now finding it even harder.

People like my brother don’t understand, for example, why they can’t go out in the car or do things they love, which makes it all the more difficult for them. 

And of course, there is the strain on family members, like myself, who just cannot see them under any circumstances – that has a huge emotional toll.

I do think awareness of disabilities is on the up and things have already changed a lot since Adam and I were growing up, but there is still a lack of representation and understanding about what we go through.  

And that’s why I was clapping for all our wonderful carers who will be on the frontline alongside NHS staff doing what they do best and supporting the most vulnerable in our society, like Adam.

For me, as a sibling of someone with a disability, it’s my duty to raise as much awareness as possible.

One of the ways I’m doing that is by running the 2020 Virgin Money London Marathon to raise money for Mencap, which supports thousands of people with a learning disability.

While I can’t be with Adam right now, I’ll be by his side mentally as I prepare to run the newly-scheduled marathon in October. 

If you have a relative who has a disability, I urge you to call their support workers just to say thank you.

Or message any of your friends who are carers or support workers to express thanks from all the siblings and families out there who can’t be with the relatives who need them.

When I do get to see Adam, I can’t wait to give him a big hug.

To find out more about Mencap’s work, visit: www.mencap.org.uk

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