Living with a disability: what’s it really like?

Chloe Turner, 30, is a wheelchair user and her husband Rich suffers with anxiety and depression. They tell Helen White-Knight how they’ve adapted their lives around both disability and becoming parents…

(This was originally published in January 2016)

Chloe and Rich live in Somerset with their daughter Ramona, who’s seven months old.

Tell us about your disability…
Both me and my brother Max have a progressive physical disability called Friedrich’s ataxia that wasn’t diagnosed until we were in our teens; we were both completely physically able through childhood. I knew I had it when Max was diagnosed but it wasn’t looked into until I was 15 when my mum noticed I had a curved spine. Scoliosis is a symptom of FA so she took me to see Max’s neurologist who confirmed that I had it. I don’t have any memory of that time.

Friedreich’s ataxia is an inherited disease that causes progressive damage to the nervous system. It manifests in initial symptoms of poor coordination like gait disturbance and it can also lead to heart disease and diabetes, which my brother has, but it doesn’t cause any learning disability.

How does your disability affect your relationship?
I’ve known Rich since school, I was in the same year as his older brother. We weren’t friends really, just aware of each other. About seven years ago we started talking on Facebook, he was living nearby and him and my brother Max were really good friends. We started meeting up and it just progressed from there. I think there was a lot of thinking on both sides about getting together. It helped that he knew Max quite well and has a close friend with cerebral palsy so he was accepting of disability.

It’s affected our relationship both positively and negatively. I can’t stay angry with Rich because I might need help transferring from my wheelchair or getting a drink. I don’t get embarrassed around him because he’s also my carer, which is both good and bad! We haven’t ever had counselling as a couple but we’ve thought about it. I’m not good at showing affection and that causes problems sometimes.

Being a mum is harder than I expected. I can’t pick her up, bath her, dress her – I’ve never even changed a nappy

What’s your day-to-day life like?
I don’t work. I did volunteer in a charity shop until I had Ramona; I went into labour on the day I was due to work my last shift. I plan to go back when they can fit me into the rota. Rich doesn’t work because he’s my carer and Ramona’s primary carer. I receive Disability Living Allowance (higher rate for both components) and Employment Support Allowance. Rich also receives DLA (lower rate for both components) and Carer’s Allowance.

For Ramona we receive Child Benefit and Child Tax Credits. We also get Housing Benefit. That seems like too much when I see it all written down, like a family the Daily Mail would hate! Obviously we couldn’t survive without those benefits. We don’t live a life of luxury but we don’t struggle. We’re sensible with what we get. When going out we have to consider things like wheelchair accessibility, suitable toilets etc. Boring stuff really.

What was your experience of pregnancy and birth like?
When I was pregnant and Rich was being tested to see if he carries the FA gene the hospital couldn’t find any proof of my diagnosis. I was tested then, and of course it was positive, but as far as we know Ramona’s completely healthy. My birth plan was a normal vaginal delivery but she was breech so I was booked in for a caesarean. She decided she wanted out sooner than that, so I had an emergency section on Valentine’s Day. Two weeks after delivery I was rushed back to hospital and spent a few days apart from Ramona, which put an end to breastfeeding.

What’s it like being a parent with a disability?
Being a mum is harder than I expected. I can’t pick her up, bath her, dress her – I’ve never even changed a nappy. But I can cuddle her, feed her, read to her, chat to her – and we’re always with her so she gets our undivided attention. I get morning cuddles while daddy is sleeping. I found a feeding pillow was amazing when she was tiny. I felt safer holding her on it. I didn’t expect the baby stage to go so quickly though, even though everyone told me it would.

What’s the one question you think people would ask about having a disability, if they could?
It’d probably be to do with sex and the answer is that everything is fine!

Helen White-Knight is senior blogger at Purple Space, and an IT accessibility consultant on anything involving technology or digital for a large bank, where she also leads the mental health agenda through their voluntary disability network. She chairs the London Regional Committee for the charity Rethink Mental Illness and is working with Baroness Jane Campbell, a well known disability campaigner, to raise awareness of mental health and disability.