In the last of the responses to our callout for Black disabled writers, Nicole Joseph discusses the complexities and nuances of relationships, loneliness, and disability.
Relationships: our human lives are based on them. Even if you consider yourself reclusive, there’s no way to avoid some level of relationship with someone, even if that is only with yourself. Relationships with other people are important, they lend so much to how we form our identities and see ourselves in the wider world and what our life could be. Relationships are complex, sticky, and tricky at times. It’s not easy being understood and trusting others. Whether it’s family, friends, co-workers, or our partners. Even if we decide we’d rather be alone, relationships with the self can be tricky, too. We all have our own individual matters to deal with that factor into our relationships and being disabled can be a hard thing to navigate amid relationships with ourselves and others.
As someone who inherited a disability later in life, understanding and coming to terms with my new needs was and still is difficult. And the stigma. Oh, the stigma. It’s hard. You start a journey of processing your new needs in the world, only to have to start another journey of unlearning all the ableist notions that the same world taught you. Notions like disability being a bad word. Spoiler alert: it’s not. I have diagnosed Crohn’s disease, which is an autoimmune condition where the immune system malfunctions and attacks healthy cells, mainly in the bowel, but it can affect the entire digestive system and other cells in the body, such as the eyes and joints. It’s also linked to another series of autoimmune conditions, so if you’re really lucky like me, you can play autoimmune disease bingo and see how many you can collect!
At 18, I was diagnosed after starting with symptoms at 16. Suddenly in Sixth Form, I wouldn’t attend for weeks and would have to try and explain to friends what was happening, all while having to process a life-long diagnosis of a debilitating health condition. Wrapping my head around fluctuating and heavy medications, specialist appointments, side effects, and symptoms at 18, I wondered; how will this affect my life, my future relationships? You have enough insecurities to deal with at that age without having to worry about toilet troubles in the freak event you do actually get asked out on a date. How are you supposed to feel attractive and desirable, with that in mind? At that age, I resolved to simply never mention my condition and hide any issues I was facing, dealing with my disability alone to develop my ‘trademark toxic trait’ of stoicism, for many joyful, misunderstood years to come. As much as I can look back and laugh, it’s problematic and difficult to bear this burden alone, especially when society does not make you feel safe to be a disabled person.
My disability is invisible, which adds another layer of complexity: if no one sees it, is it really there? My pain and symptoms certainly are, but they’re under wraps and behind closed doors. There are some characteristic manifestations of Crohn’s disease: significant weight loss, a swollen ‘moon-face’ from steroids, but it is mostly undetectable. I may appear as healthy as a horse, as many Crohn’s sufferers do, but the reality is there is a day-to-day struggle and it’s hard to explain and for others to understand. The invisibility of my condition lends for an explanation to be owed and in many of my relationships, I have to ‘come out’ about my disability over and over for others to understand my needs. Explaining can be exhausting. It can seem to go through one ear and out the other, or as if it doesn’t matter to some people.
This gas-lighting can make it more difficult to manage your condition properly and feel comfortable talking about it. It’s hard to have the courage, to speak out about symptoms and procedures that might be considered embarrassing in our taboo society, especially when it sometimes elicits these reactions. This gas-lighting is frustrating and dangerous, it further erases the issues disabled people face that damage our self-esteem and our ability to navigate a world that isn’t accessible, inclusive, or understanding of our different needs and experiences. Experiencing this is incredibly painful, it can worsen self-esteem and alienate you in your ideas around your desirability in every sense of the word.
So many disabled people suffer from feeling othered and isolated because of this, as an inaccessible and stigmatic world tells them that is the only way to have their access needs met: alone. Statistics prove this division between disabled and non-disabled people, a report by Sense states: ‘49% of non-disabled people feel that they do not have anything in common with disabled people and 26% admit to avoiding engaging in conversation with a disabled person.’
The loneliness and isolation disabled people face was a pandemic of its own before Covid-19. The Covid-19 pandemic has only further highlighted the discrimination towards disabled people, ‘as figures suggest two-thirds of Covid-19 deaths have been disabled people’ in this article from the BBC, as ‘lower priority’ disabled people are subjected to a Do Not Resuscitate order. Needless to say, the perceived lack-of desirability of disabled people is a direct result of ableist attitudes, some that disabled people like myself have wrongly internalised and have to grapple with, making the formation of relationships even more difficult for us.
This is why it’s important to speak up and out against taboo, to accept all bodies and minds for all their weird and wonderful ways, for differences to be accepted and for it to be known that we are all worthy and desirable in every sense of the word. Non-disabled friends, family, partners, co-workers, go hard for the disabled people in your life! Make this change. We all know what it is to feel lonely and how we wouldn’t wish it on anyone, so don’t further the barriers a disabled person already faces in living with their disability in an inaccessible world, by making them feel their needs are undesirable.
Nicole Joseph is a Writer-Director mainly working in theatre, based in Leeds and from Bradford. She was recently an Assistant Director at Leeds Playhouse on their Ramps On The Moon co-production of Oliver Twist. Leeds Playhouse programmed her recently to scratch a piece of her new play, ‘Ghosts of Spirits’, which she wrote and directed for an audience in their Bramall Rock Void studio. Nicole was also an Assistant Producer at Slung Low Theatre, who do large-scale arts projects with the community.
Follow Nicole on Twitter.