I just want to be able to move around my own house. Why is that so hard?

Like many people at the time, my desire to leave London took hold (Picture: Samantha Renke)

What’s the most stressful event you’ve had to go through? For many adults, it’s either a wedding, a divorce, or moving home.

Well, I’ve never been married or subsequently divorced so I can’t comment, but what I do know is that moving house late last year has given me more stress and grey hairs than I can count.

It’s been frankly chaotic since I made a decision to leave my trendy flat in the heart of London to move back to my hometown in Lancashire after the best part of 12 years.

My eventual moving day was two days before Christmas. I’m clearly a glutton for punishment.

Of course, this would be stressful for anyone – but I can’t help but feel that living in a world that seems to not care much about disabled people can turn even minor, everyday problems, into colossal ones.

Like many people at the time, my desire to leave London took hold during the pandemic, when the claustrophobia of lockdown and the reminder of life’s fragility made me reevaluate my needs and desires.

Unsurprisingly, I was not alone. 2022 saw more than 150,000 households leave London for the commuter belt in pursuit of peace and quiet.

I’m clearly a glutton for punishment (Picture: Samantha Renke)

Ultimately, I wanted to be closer to family and friends and yes, I wanted to be woken up by birdsong in morning – not the noise of people urinating outside our flats, which was doubly grim for a wheelchair user as I couldn’t hop over the puddle, having to simply roll through it!

But my desire to leave the hustle and bustle of the capital was about so much more than that.

As a wheelchair user and someone whose needs have changed over the years, relying on more mobility equipment and support, my living space was just too small and impractical.

All my space was being taken up by mobility aids like my large power wheelchair, a commode for over the toilet for when I fracture bones, and even small things that the homes of non-disabled don’t need, like a pump for my wheelchair or a sliding board for me to move from my chair to other seats.

It left me having to use external help rather than being able to modify the space to meet my ever changing needs – and as someone who values her independence, that was too much for me to bear.

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My flat was no longer fit for purpose.

Ultimately, I wanted to be closer to family and friends (Picture: Samantha Renke)

Leaving my home left me with mixed emotions. I fought for years to get it and it was in such a prime location, especially for work.

But I had to think about my future, and put simply I needed more square footage.

Sure, I could have requested a move to perhaps a bigger space, but we have a social housing crisis that affects millions, but especially disabled people.

There’s also a devastating shortage of accessible homes – with just 9% of dwellings in England containing basic accessibility features like a bathroom at entrance level or wide doorways.

Realising how little appropriate accommodation is available makes me realise how warped and ableist housing policy is in the UK.

I’m not asking for anything impossible – I don’t want a robot cleaner or teleportation machine, I just want my basic access requirements met.

And finding a home that meets even these is really only half the problem. If you are a disabled person who has found a home, you may not qualify for any financial support from local authorities to help adapt it.

The Disabled Facilities Grant helps disabled people fund alterations, but it is capped at £30,000 and hasn’t increased by a penny since 2008. Over 15 years, through recessions, pandemics, and inflation, and disabled people like me haven’t been deemed worthy of extra support to make our homes livable.

But moving across the country to a bigger and more accessible place has presented its own challenges.

There’s the seemingly endless paperwork and bureaucracy that goes with moving from one local authority to another.

I made both councils aware of my move in October – a full two months before my official moving date – in order for my care package to transition.

I almost feel privileged to be in the situation I’m in today (Picture: Samantha Renke)

That was two months of anxiety as I was never sure whether the two budgets would align.

I normally receive financial support to hire a PA, and had to wait weeks to find out if I would receive the same amount of money.

Like every process of getting support as a disabled person, it can feel like there are wins and losses.

I had the win of finding out I could hire a PA for 4.5 more hours a week, but my heating bills would increase and I would have to pay over £200 a year for an emergency alarm that was free in my old accommodation.

It’s all part of the disability price tag.

I almost feel privileged to be in the situation I’m in today. I’ve moved into a family home, a property that went to the family after my dad passed away when I was nine; a home that will eventually come to me and my sister.

Since moving, I’ve felt a wave of calm come over me knowing this will be where I will stay for a long time. This is because life with a disability label is often filled with constant fear that support will be taken away from you.

For too many in recent years, that fear has become a reality.

Austerity and cuts have always negatively impacted the disabled community. We seem to always be at the sharp end of an onslaught of cost-cutting.

I truly believe the lack of accessible homes and provisions, facilities and grants come down to the simple fact that disabled people are often not afforded the same basic humanity as non-disabled people.

We are constantly measured by our productivity and what we contribute towards society in order to be considered ‘worthy’ of investing in.

Housing, and my own experience of moving home, is just one example of the often grim way that disabled people’s needs are handled.

No person is less deserving than another.

And the sooner we realise that, the better, for all of us.

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