Well, it’s been another crazy week in Benny’s world!

And before I go and get my fish and chips, I thought I’d write another little blog. Because there’s been quite a bit happening this week, and it’s got me thinking about what it really means to be disabled, independent and able to work.

We’ve had some news about the government listening to people with learning disabilities about social care. I’ve also taken another step towards getting the support I need myself.

And I’ve been back doing disability awareness work with Vision Express, where I got to try some technology that could genuinely change how I manage busy places.

So, here we go!

It’s Great That the Government Is Listening – But Please Listen to All of Us

I’ve been pleased to see more conversations about learning disabilities and social care in the news.

The government has been working with organisations including Mencap to hear from people with learning disabilities about their lives and the support they need.

And that’s great.

But I really hope these conversations go further.

I hope the MPs and ministers involved also speak to ordinary working-class disabled people. People who get up every day, go to work, volunteer, run businesses or try to find employment, but still need support to get through their daily lives.

Because here’s the thing:

Just because we can work doesn’t mean we don’t need care and support.

And just because somebody needs support doesn’t mean they can’t work.

I’m a perfect example of that.

I work bloody hard. I run shows, perform comedy, do disability awareness workshops, work on a farm and try to build my own businesses.

But I still need help.

Those two things can exist together.

Direct Payments Help Us Live Our Own Lives

One thing I really want the government to understand is how important direct payments can be.

Direct payments allow eligible people to receive money from their council to arrange their own assessed care and support, rather than having all their services organised for them.

That can mean employing somebody who understands your needs and fits around your life.

For people with learning disabilities, physical disabilities, mental health difficulties and other support needs, that flexibility can make a massive difference.

It can help us live independently, stay connected to our communities and, where possible, continue working.

And surely that’s what we all want?

Supporting somebody to live safely at home can also help prevent situations where they end up needing more intensive care or hospital support.

We’re not asking to be a burden.

We’re asking for the support that allows us to live our lives.

I’ve Finally Asked for Help Again

About eight years ago, I used to receive direct payments.

But I found the whole system difficult.

I couldn’t understand why I was being asked to contribute towards my care when I was already struggling to afford food, clothes and the adaptations I needed.

I know councils have rules about financial assessments and contributions, but understanding how those rules apply to you is another matter entirely.

And when you struggle with reading and paperwork, it can become overwhelming.

So, for a long time, I tried to manage without that support.

This year has been particularly difficult.

Thankfully, I’ve had help from my good friend Craig, who has helped me understand something important:

Without the right support, I can’t live the independent life I want.

When I got back from Edinburgh, I decided to start the ball rolling.

I phoned social services and asked for help.

Hopefully, over the next few months, I’ll get an answer about what support I can receive and whether I can employ my own staff again.

That’s what I really need.

I’m Not Thick. I Just Need Things Explained.

I don’t need somebody to come in every morning and wake me up.

I need somebody to help me start my day properly.

Someone who can make sure I’ve had a decent breakfast and that I’m safe.

Someone who can read my letters with me.

Someone who can help me understand what I’ve got planned for the day.

Someone who can explain things when I find them difficult to understand.

Because of my cerebral palsy and learning difficulties, I struggle with reading. Sometimes I need help understanding information before I can make a decision.

That doesn’t mean somebody else should make all my decisions for me.

It means I need information explained in a way I can understand.

I’m not dumb. I’m not thick. Actually, I’m quite clever!

I’ve built shows, run businesses and worked with some fantastic organisations.

But I still need help with certain everyday things.

And that’s what I hope the government starts to understand.

We want to work with society. We want to contribute. We want to earn money and build our own lives.

So why can’t we have the support we need to do that?

Back at Vision Express!

Now, onto something a bit more exciting!

This week, I went back to do another disability awareness workshop with Vision Express, following the work we did together last year.

But this time there was a little twist.

They were introducing their second-generation Nuance Audio hearing glasses, and we created a game so employees could have a go and understand how the technology works.

I’d had the chance to try the glasses a couple of weeks earlier.

And my first reaction was:

“Wow. This could be a game changer!”

These glasses are designed to help people with certain hearing difficulties hear speech more clearly.

But trying them got me thinking about something else.

Could technology like this help people like me in busy social situations?

Imagine Being Able to Focus on One Person in a Crowded Room

I struggle a lot in crowded places.

When there’s loads of noise, people talking over each other and lots happening around me, I find it difficult to focus on the person I’m actually trying to have a conversation with.

It can be exhausting.

And sometimes it puts me off going to big social gatherings altogether.

When I tried the glasses, I found the experience really interesting.

It made me think about next year.

Imagine if I could go to a big networking event, a comedy gathering or a busy social occasion and find it easier to follow a conversation with one person.

I might feel more comfortable.

I might meet more people.

I might even get more work out of it!

Now, I want to be clear: these glasses are hearing technology, and I’m talking about my own experience trying them. I don’t know whether they’d help everyone who struggles in crowded situations, particularly if their difficulties aren’t related to hearing.

But for me, they were exciting enough that I’m thinking about saving up for a pair.

And that’s another reason accessibility matters.

Sometimes one piece of technology or one small adaptation can open up opportunities that weren’t there before.

If you’re interested in the glasses, you can ask Vision Express about trying them and whether they’re suitable for your needs.

You can find out more here:

Vision Express – Nuance Audio glasses 

And if you do try them, let me know what you think. Tag me in your posts, because I’d genuinely love to hear about your experience.

Independence Doesn’t Mean Doing Everything Alone

That’s really the message of this week’s blog.

Whether we’re talking about direct payments, support workers, accessible technology or disability awareness workshops, it all comes back to the same thing.

Disabled people want to live our own lives.

Some of us want to work full-time.

Some of us want to work part-time.

Some of us want to volunteer.

Some of us want to run our own businesses.

And some of us can’t work, but still deserve the opportunity to live independently and enjoy life.

We don’t all need the same support.

I need somebody to help me with breakfast, paperwork and planning my day.

Somebody else might need help getting dressed, travelling to work or communicating.

And somebody else might need completely different adaptations.

That’s why it’s so important that the government listens to disabled people themselves.

Not just organisations speaking on our behalf, but people living these experiences every single day.

I don’t want somebody to take over my life.

I want somebody to help me live it.

I want to keep performing. I want to keep building Blue Badge Bunch. I want to keep making people laugh, working on the farm and doing my woodwork.

And if the right support helps me do all those things, surely that’s a good thing for everybody?

Give us the right support, give us the right adaptations, and let us show you what we can do.

Right, that’s enough from me.

I’m off to get my fish and chips before they shut! 😂

Benny Shakes