The hardest part about being disabled isn’t usually the health issues. I’m used to the pain, I don’t know what having full mobility feels like, I’ve long since accepted that I have non-existent logical capacities, and the fact that I’m acutely aware of my brain function declining over time is frankly just another part of my life at this point. Having a disability definitely isn’t easy: it’s hard to feel like a whole person when you don’t even have a whole brain, and I have spent more nights than I’m comfortable admitting to anyone screaming and crying at nothing, something, the walls, into a pillow, because I am so confused, and so tired, and just so angry at God for pushing me so close to my breaking point every single day. While my countless illnesses have done nothing but strengthen my faith, I am aware that the life I’ve been given isn’t an easy one. But like I said, none of that is the hardest part. 

I can accept that I’m disabled. I’ve never been anything else, and if my brain were to suddenly gain full function, I’d no longer have the traits that, good or bad, make me who I am. I am unapologetically myself, because I literally do not have the brain capacity to be anyone else. I don’t love myself, but I have come to terms with who I am. But I don’t know if everybody else has. 

There are so many things that I cannot do for myself. This morning, I had to ask for help getting dressed because I couldn’t pull my trousers up or zip my boots up; I couldn’t bathe myself until I was about eleven years old, and even now I often have to sit down mid shower because I simply cannot stand that long. I need to be reminded, due to worsening memory loss, that I put garlic bread in the toastie maker before I burn the entire flat down (sorry, Lucy and Emily). Whether I like it or not, and most of the time I don’t like it, I have to rely on other people for most aspects of my life. I like being helped. I like being taken care of. But I don’t like living my life with guilt bearing down on my shoulders, because other people need to do things for me just so I can function to the same level that they can do all by themselves. My parents love me, sacrifice everything for me, but they made me acutely aware of this. I knew I was not an easy child to raise, requiring more care, more guidance, more money… I do not think my parents were expecting the storm of problematic behaviour and hospital bills they’ve gotten when they decided to have a child.  

So, the hardest part about being disabled is what other people think about it. It’s normal to worry about what other people think about you (hello, crippling anxiety that convinces me even my closest friends secretly dislike me), but when you’re disabled, sometimes your health literally depends on what other people think of you. For the most part, I don’t ‘look disabled’, or whatever rude phrasing my able-bodied peers think is a compliment (more on that in a bit). The thing is though, I do look visibly non-white. I do look visibly Muslim. I present as female. Although I’ve been incredibly fortunate not to have experienced much public discrimination or harassment for these things, I’m already in a pretty marginalised position in society. I feel like, also, a lot of us in the disabled community view ableism as one of the more socially acceptable forms of discrimination as well – while there are many amazing efforts to counter sexism, or racism, or anti-religious harassment, the inherent inaccessibility of life is taken as is by most people. Being disabled is still taboo. 

I read an amazing article the other day by Imani Barbarin, a black disabled activist, about ableism-related anxiety and how being a racial minority added to her fears regarding presenting as visibly disabled. I have never read something I more heartbreakingly related to. I am afraid that if I walked into a lecture theatre with a walking stick one day, all eyes would be on me: ‘What happened to them?’ I am tired of answering questions. I am tired of justifying my existence to the passers-by around me: no able-bodied person would ever have to do this in the same way. Since starting to wear hijab earlier this year, I have never felt more spiritually whole, but so visibly aligning myself with a group there’s prejudice and hatred against makes me even more fearful to use a mobility aid when I need one. I don’t want to be the mixed-race, Muslim, gay, non-binary, disabled person: if you read a book where a character had that description, you’d immediately think the author was writing a diversity dump token character in a half-arsed effort to increase readership. 

Even when I don’t use a mobility aid, sometimes I need provisions allocated to disabled people: accessible toilets for when my legs are weak or when I don’t have as much control over bodily functions (destigmatising incontinence even for myself has been a bit difficult), definitely seats close to the doors on public transport, and straws, I often need bendable, single use plastic straws – before you ask, yes, I do buy my own, but sometimes I have to ask for them. I shouldn’t have to justify sitting in the front of the bus when I don’t have my stick; even though the disabled toilets in the library proudly say ‘not all disabilities are visible’, I feel some odd sense of guilt when using the facilities I have a genuine need for and a right to use – I mean, it says it right there on the door! I am stuck in a limbo, attempting to balance taking care of my physical health and not aggravating the in-itself disabling fear of others’ judgement; standing up for my place in this society while trying to maintain some semblance of privacy, because why on earth is a random bus passenger or waitstaff entitled to knowledge about my health? Although part of me is nervous about looking like a diversity hire trope, the other part of me worries that if I don’t make use of my mobility aid, I won’t get taken seriously as a disabled person and won’t get the adjustments I need to be healthy. 

But I’m not writing to tell you that restaurants need to provide straws without needing to ask for it. I’m not writing to tell you that even if we don’t look it, some of us very much do need to use the disabled facility. I sit here, writing with aching muscles in between seizures, because whether it be on the strangers I interact with in everyday life or on my loved ones, I am so immeasurably done with feeling like a burden. After the latest incident of someone not being comfortable with my health issues and autistic behaviours, I convinced myself at the ripe age of nineteen that I did not want to be loved. I hid behind ‘commitment issues’, told myself that I wanted to live alone and isolated, because I hated all people; friends or relationships were a waste of time and unnecessarily tethering. To the incredible and loving people that are in my life now, the idea that someone would not want me in their life because of my health issues is inconceivable – why on earth would that be an issue? But when countless people have told me that they could not handle having me in their lives, when my mother told me to not be disappointed if I ended up alone because not everyone would want to be with someone with as many complications as I have, is it really so hard to imagine that I spent hours one night crying into my then-partner’s shoulder that I was so, so fucking sorry, that they deserved better than me, that could they please forgive me for needing so much extra effort than an able-bodied partner would? Whenever a friend puts the heating on when I come over or offers to Uber somewhere since I can’t handle the walk, I do feel like a burden, even if they genuinely don’t mind in the slightest. 

One of my best friends wrote awhile back that self-care and self-love needs to be practised collectively, not just on an individual basis. While that may seem paradoxical, it’s a vital outlook when it comes to navigating disability. A crucial and overlooked part of disability is recognising that my health needs are just that – needs. Even if I can’t fulfil them by myself as well as an able-bodied person might, I have no less right to be healthy and live my life the same way everyone else does, just because I need some help from others. I will stand by this for as long as I live, which I realise coming from a chronically ill person has questionable amounts of validity. But what I need to make myself realise is that the same things I tell every other disabled person experiencing these things apply to me as well: that my disability is valid, no matter what it looks like. That I don’t need to justify the necessary steps I take to make myself healthier to other people. That I am worthy of love just the way I am, and that I am not a burden.