Why we need to open up the conversation around disability
This UK Disability History Month, Soho House Inclusivity Board Member, Lucy Daramola, opens up about living with lupus and the societal changes we need to make
Wednesday 16 November 2022 By Lucy Daramola
I gradually lost the strength to walk and sit up unaided at the age of 18; I spent many weeks confined to my bed while medical teams worked hard to find the cause. I started to question what my life would look like if I lost the use of my legs. Eight weeks passed and I was diagnosed with lupus (SLE) and rheumatoid arthritis. I was lucky to be diagnosed, as I’ve since learnt that so many people go through life undiagnosed, battling lupus without treatment. Lupus is a long-term autoimmune condition that can cause inflammation in the skin, organs, and various other places in the body. The immune system, which normally protects us against infection and illness, starts to attack the body’s own tissues instead.
My condition is sometimes referred to as invisible or non-visible disability, which can defy stereotypes of what people might think someone with a disability looks like. Invisible disabilities can be difficult to navigate, but as a society we need to educate ourselves and understand that not all of them will be immediately apparent.
As explained by Sherifa Ibitola, a freelance access consultant and disability activist, ‘the social model of disability identifies systemic barriers and social exclusions that make it harder for disabled people to live an authentic life. I believe these barriers have caused many disabled individuals, including myself, to question their place in society. Instead of exclusion, there needs to be more opportunities for disabled people to be included in broader society. Disability isn’t the problem, society is.’
We need to change the language and narrative around disability by shifting the focus onto ability, as explained in a recent Financial Times report by René Bakker, associate professor of strategy and entrepreneurship at Rotterdam School of Management, Erasmus University. ‘First, we need to eliminate social as well as physical barriers to work. Second, we need to start thinking in terms of ability rather than disability. Third, we need to stop treating those with a disability as a discrete category of human beings,’ he wrote.
Assistant head teacher, Emmanuel Awoyelu, agrees, describing some of the current challenges faced in the UK education system. ‘As an assistant head teacher who has worked in both mainstream and special schools, there is no question that there is a growing awareness around special educational needs and disability. For many years, children with SEND (special educational needs and disabilities) have been an afterthought and, in some ways, viewed as an inconvenience,’ he says. ‘One thing is for certain; we have a long way to go before we can truly say we are an inclusive society, but at least we are having the conversation. It is a step forward.’
Ultimately, this is a ‘we’ problem. Circumstances can change so quickly, and in the blink of an eye society today just might not be equipped to cater to the new you. In 10 years, just over a fifth of the UK population will be aged 65 and over, according to the Centre for Ageing Better. That’s one in five of us, whose abilities will deteriorate. How will we deal with that? We need to continue the conversation, raise awareness and make the world we live in a fairer and more equitable place to exist.
Lucy Daramola is a global Inclusivity Board Member at Soho House and client partner lead at Microsoft.
To find out more about UK Disability History Month, click here.