My Home Truths
28 November 2014
by Catherine Scarlett
After several years of not having a diagnosis, I was recently told I have a form of motor neurone disease, which unfortunately that means I'm gradually getting less mobile.
I have very little grip in my right hand and get a lot of spasticity in my legs and arms. I can shuffle a few paces but need a wheelchair to get any further. I'm worried that I will soon get too wobbly to get around the house.
I live in a small, two-up-two-down terraced house with a kitchen extension and utility room we added 10 years ago when we renovated the house. I helped with plaster boarding, ceilings, and demolition work. I used to be very physically fit.
We only have one bathroom, which is upstairs. The staircase is steep and narrow. From the bedrooms to the bathroom there is a step down to the landing and step up to the bathroom, and the upstairs rooms are too small to get a wheelchair around.
Downstairs, there isn't anywhere to have a commode — it's all is open plan with the front door opening directly into the street, and I have three children living at home. So I end up spending a lot of time in my bedroom to be near the loo. Even then the steps to the bathroom make it difficult.
The access to the house isn't very good for wheelchairs either: there are steps to the front door. There's a passageway between our house and the neighbour's which gives me access, but it has a step too. My husband has put a piece of wood at the bottom to act as a ramp but we can't put in a proper ramp because it goes directly onto the pavement.
I can manage this at the moment by wheelying up the bump and throwing all my bodyweight forward. Getting down the drop means being very careful as it is at the bottom of a slope. I have managed to tip myself out of the wheelchair before.
The passageway is also very steep and I can manage it when I have my powered wheels on the wheelchair as they brake as well, but it is much harder to control with manual wheels. I have narrowly missed crashing into the road or parked cars on a few occasions. I don't know what it will be like when the weather gets worse.
The social services occupational therapist has assessed the house for adaptations and says it can't be adapted for everything I need. She also said that improving access to the house and putting in a downstairs loo would cost more than their budget for individual properties.
I recently got a letter from the council saying that they have put me on their waiting list and, after my MP intervened, we are the second highest priority — but that they don't know when a disabled-friendly home will become available.
If my house had been built to Lifetime Homes standards, it would be cheaper and easier to adapt it for me now. Instead, I'm in limbo, stuck in a home that is no longer suitable. Thousands of disabled people are in the same situation. We urgently need more disabled-friendly homes.
Catherine is supporting our Home Truths campaign for more disabled-friendly homes. Show your support too.