Posts

Parenting with both hands tied behind my back

Being a mother is quite simply the most life-affirming, joyful and challenging journey I have ever been lucky enough to undertake. It is a privilege to be my children’s mother and, in a parallel universe, I would have been there every step of the way. I would have been at the school gates every day… Read more Parenting with both hands tied behind my back

"Hidden Illness": photo of duvet and pillow with just one arm emerging from underneath it

It’s not ME, it’s you – can the chronically ill embrace the social model?

The big idea of the social model is to distinguish between ‘impairment’ and ‘disability’: ‘impairment’ is someone’s condition, ME (myalgic encephalomyelitis, or ‘chronic fatigue syndrome’) in my case, whereas ‘disability’ describes the way that impaired people are oppressed and excluded from society on top of their impairments. This challenges the assumption that disabled people need… Read more It’s not ME, it’s you – can the chronically ill embrace the social model?

Ill versus disabled – is there a distinction between the two?

Disabled activist, Stella Young recently wrote: ‘The social model tells us that we are far more disabled by inaccessible environments and hostile attitudes than we are by our physicality. My disability comes not from the fact that I’m unable to walk but from the presence of stairs.’ How true is this of people who are… Read more Ill versus disabled – is there a distinction between the two?

"Hidden illness": woman standing at a window looking out onto blurry landscape

Sorry

I’m sorry. I’m really sorry. Sorry I can’t make it to your birthday party, your family gathering, your funeral. Sorry, no, I can’t come over for tea on Friday. Why? No, I’m not doing anything else. But I’m going out for lunch the Tuesday before. Yes, I know that gives me Wednesday and Thursday to… Read more Sorry

Stairs or stares? Obstacles to using a wheelchair with invisible illness

by Ella Sumpter I have been given a power wheelchair that used to belong to my wife’s grandfather. I am very grateful. It will be very useful when I have to go to the local shops, or be somewhere where I am expected to stand around or stay on my feet a long time. It… Read more Stairs or stares? Obstacles to using a wheelchair with invisible illness

Title image, illustration of woman crafting in bed

Chronic Illness and Confidence

by Marion Michell You can listen to an audio-recording of Marion’s essay on Soundcloud. Lately the phrase you’re just not good enough has plagued me greatly. My art, my writing; my sleep, my rising; my ability to connect, converse, consider; my quests for energy and cure; upswing of any sort – everything seems veined with lack. M.E.… Read more Chronic Illness and Confidence

2. EMPLOYMENT Chronic Illness and graduation

Rebecca Boot tackles the painful subject of employability I’m back at university, studying again after my body threw a fantastic tantrum the last time I tried it. My university has a real focus on employment and one of the highest graduate employment rates in the country. That is great, everyone wants to be able to… Read more 2. EMPLOYMENT Chronic Illness and graduation

Chronic illness and social exclusion series 1: EDUCATION

Geoff Jones recalls his experiences of education as a child with severe chronic illness Access to education is often overlooked when considering chronic illness and social exclusion. Education is particularly relevant if those affected become ill during childhood. In today’s Britain, where a university education has arguably become the norm, those becoming chronically ill during… Read more Chronic illness and social exclusion series 1: EDUCATION

Title image a sign directs to Utopia

Spoonie Utopia*: an inclusion thought experiment

“Under this Pro-Spoonie government I still don’t feel well but I do feel better about myself and my role in society.” *‘Spoonie’ is an informal term for people who live with chronic energy limiting illness. I am just home from going out in my new wheelchair. It was great to go out socially and not… Read more Spoonie Utopia*: an inclusion thought experiment