All posts by Carrie Aimes

I was born with a form of muscular dystrophy which has a progressive effect on my body and physicality. I have a severe scoliosis (curvature of the spine) which, for various reasons, is not surgically corrected. This causes asymmetry and a shortened torso.

I am 30 years old and I have the progressive condition, Ullrich congenital muscular dystrophy. As a result, I am completely non-ambulant. I use a powered wheelchair and am unable to transfer without the use of a hoist and support from carers.

Admittedly I was unaware of the pioneering disability advocate Robin Cavendish prior to the release of Breathe, a much anticipated biopic starring Andrew Garfield.

Carrie Aimes, 28, has Ullrich congenital muscular dystrophy and is a member of our  network of young disabled campaigners. In this personal blog, she looks back on her decision as a child not to have corrective surgery for her scoliosis.

I’m presently in the process of recruiting new carers. Many applicants have expressed their disbelief at how much I do for myself. One even congratulated me, “well done you!”, to which my current carer responded with a subtle mocking applause.

Today (28th February) is Rare Disease Day, the chance to raise awareness of conditions affecting around 3.5 million people in the UK. Around 75 percent of those living with a rare disease are children.

This blog forms part of Trailblazers Dating Diaries, which looks to lift the lid on dating and relationships when having a disability.
 

I’m not at present in a relationship and that’s fine, that’s okay.

Last week Channel 4 aired the final episode of its reality series The Undateables, a dating show for disabled people. For those who are unfamiliar, individuals with any disability are invited to appear on the show, now in its sixth season.

On behalf of all of us who require personal or social care, I invite anyone considering taking on the role of personal assistant to think carefully about what it really means before you do apply.

Firstly, this is not a choice for us.