Finding people like me a home could take 47 years

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Story by Mik Scarlet and The Metro

That’s how long someone joining a local authority waiting list for a new-build wheelchair-accessible home in England might have to wait.

Such is the awful state of accessible housing in the UK right now – and I know the personal struggle all too well.

I’ve been disabled since birth, after being diagnosed with a rare form of cancer known as neuroblastoma at just six weeks old. I was very lucky to survive the cancer and treatment, which left me paralysed down my right side below my waist.

Then, following an unforeseen side effect of the cancer treatment, I became a full-time wheelchair user at the age of 15, when my spine collapsed. Overnight, I went from walking – albeit with a limp – to needing wheels to get everywhere.

I honestly thought my life was over. 

I applied for social housing because I could only dream of buying a home or renting privately (Picture: Mik Scarlet)

My prognosis wasn’t great either, with everyone involved with my treatment not sure I would survive. But after months in hospital, I was sent home to my mum’s bungalow in my hometown of Luton.

My family added a ramp to the front door, some sliding doors to my bedroom (formerly the dining room), and made changes to the bathroom. Luckily, I flourished with these home adaptations, as well as the care of my family.

This was my very first foray into accessible housing. It’s been a frustrating journey ever since. 

At 20, I applied for social housing because I could only dream of buying a home or renting privately. At the time – before the Disability Discrimination Act of 1995 – banks or landlords could refuse to lend or rent to disabled people.

A friend told me about Habinteg Housing Association, a social housing provider that specialises in accessible homes (Picture: Mik Scarlet)

I hoped it would be a quick process, but boy, was I wrong. Seven years after first applying, my local council finally offered me a bungalow in Luton.

To be fair, it was brand new, had an accessible kitchen and bathroom, wide doors, a garden, and handrails.

It was a dream, but the only problem was that I had just started my career as a television presenter, which meant lots of days working in London.

Luckily, a friend told me about Habinteg Housing Association, a social housing provider that specialises in accessible homes. I was thrilled to see that there was an East London home available.

Some of these residences have been unadapted so have needed to be made accessible for me (Picture: Mik Scarlet)

At 28, I applied for it and got it within a few months. Unfortunately, the flat had been squatted in so it was in a real state. But a few weeks of cleaning it up turned it into the designer flat of my dreams. 

After a few years there, I moved to a bigger place in Shepherd’s Bush – again, through Habinteg – then eventually on to two other properties in Camden. Some of these residences were not adapted so they needed to be made accessible for me, while others have felt too small or cramped.

Thankfully, I’ve been in my current Camden home with my wife, Diane, for over 20 years now. But it’s still an ongoing process to get the flat perfect for my needs, mainly because it wasn’t designed as a proper wheelchair accessible home.  

I’ve been in my current Camden home with my wife, Diane (left), for over 20 years now (Picture: Mik Scarlet)

I needed a level-access wet room installed – as my impairment has changed as I’ve got older – and a new kitchen, so it seemed sensible to explore a move.

That’s when I read that there could be a wait of up to 47 years, which is based on freedom of information requests to 325 local authorities across England, showing that there are an estimated 20,000 people on local authority waiting lists for a fully wheelchair accessible home.

Instead of waiting, we applied for a Disabled Facilities Grant – a grant that’s available from your local authority to help older and disabled people remain in their homes. And it’s a long-winded process, with lots of forms to fill out and countless visits by numerous council officials.

Thankfully, one year on, the grant was approved, and we now have a wetroom, with the new kitchen on the way too. I finally feel settled.

Today, disabled people can legally buy or privately rent, but the options are limited (Picture: Mik Scarlet)

Unfortunately, many disabled people around the UK still struggle to get accessible housing.

What always saddens me is talking to young disabled people as part of my new role as co-CEO of the charity Phab, which brings disabled and non-disabled people together for them to feel independent, meet new friends and gain confidence.

Today, disabled people can legally buy or privately rent, but the options are limited.

Find out more

Habinteg Housing Association delivers and promotes affordable, accessible housing. One in three of our properties are designed specifically for wheelchair users, and most are built to an accessible or adaptable standard.

We want communities to include disabled people, offering places to live that meet their needs, supporting them with the highest levels of independence, choice and control over daily life. 

For more information about the Habinteg Insight Group, visit their website here.

I’ve heard of cases where social housing built to be accessible is then let out to non-disabled people who were next on the list. So any adaptations might get taken out and wasted.

It is time to develop a clear policy around accessible housing. We need the Government to make it mandatory for all new homes to be built to an accessible and adaptable standard, which includes an entrance level bathroom, wider doorways and corridors.

We also need all local planning authorities to set targets for new homes that are fully wheelchair accessible. To do this, I joined Habinteg’s Insight Group to add my voice to the campaign for more accessible homes.

Remember that anyone can become disabled – at any point in their lives. What will you do if you aren’t able to climb the stairs to your bathroom anymore?

We need to start building for that reality. Imagine if you have to wait up to 47 years to find a home that might be close to what you require.

Disabled people cannot afford that wait – they need stability, independence, and dignity to live their lives. Surely that’s not too much to ask.