Take a Seat at the Table: Dissecting the Intersection of Creativity and Disability

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Existing as a disabled or chronically ill person in the middle of the pandemic is tough. Not only are you dealing with your pre-existing health conditions, you’re watching as the world is enveloped by a virus that keeps us indoors, keeps us from seeing our friends, and isolates us even further from normal reality. If you’re like me, your Instagram feed is currently filled with information that is helping us open up our worldviews: whether that’s concerning racial inequality, gender identity, poverty, or any other social issue.

Over the past few months, I’ve taken great comfort in following disabled activists and creatives online, seeing them live their lives, share their experiences, and pull amazing looks has helped me keep a small piece of my sanity. But so often, we share an infographic without engaging in who is behind the content. This issue, we want to shine a spotlight on four amazing Black disabled activists, creatives, and content creators — to discuss not only how able-bodied people can step up for the disabled community, but to share their wisdom for other disabled and chronically ill people on how to find your voice, community, and confidence. 

Caprice-Kwai is trying to break boundaries in an industry that traditionally has not been the most welcome of disabled people: modelling. A full-time fashion student, she began documenting her process online, starting a blog to share her experiences and being the change she needed to see not just in fashion, but in the world. Kenzie, aka Kenny aka Kenneth the Tooth Fairy is an artist, singer-songwriter, brainchild of the BBYTTH label and co-founder of Sick Sad Girlz; a community for those with mental health struggles, disabilities, or chronically illness. 

A certified member of the Polyester family, Kenzie has appeared on our podcast, helped out on shoots, and held our hands through many sick, sad moments. When Kenzie and her best friend Rosa started Sick Sad Girlz, they wanted to answer the question: “what would it look like to hold space for people like us to tell their stories?”. Providing support, community, and friendship for so many people that are often without, Sick Sad Girlz holds twice-weekly Zoom meetings alongside their Instagram output. 

Alicia, better known as AP Young, is a blogger, business owner, mum and wife living with a disability and chronic illness. Her Instagram is a breath of fresh air; effortlessly blending amazing outfit posts with raw honesty and educational tools surrounding her conditions, body, and life. In 2016, after giving birth to her last child, Alicia began to experience drastic symptoms, leading to a diagnosis of thyroid disease and osteoarthritis. Degenerative and painful, Alicia “suddenly went from being this active and mobile person to someone who needs a cane and rollator to get around.” Deciding to chronicle her life with her new found limited mobility, she found her voice and became determined to speak out on the “challenges I face as a fat body with a disability within the health care system, going into public places with lack of access for mobility aids, and unlearning my own ableist views I didn’t know I had” 

A writer and organiser, 26-year-old Walela Nehanda (pronouns they/them) caught our attention via their educational and activist work on Instagram and on Patreon. Describing themselves as “Black, non-binary, and queer as hell,” Walela has advance stage leukemia, and is currently awaiting a bone marrow transplant. Living on Tongva Land (Los Angeles), with their partner/caregiver, their cat Panther, and their dog Riley, Walela is more than generous with their words and time — educating the masses via the internet on issues surrounding Blackness, gender, disability, and the intersection of the three.

We caught up with the four of them over email to put together this digital roundtable:

All of you have managed to cultivate communities around disability and chronic illness, whether that’s around your own personal internet presence or through community endeavours. What inspires you about disability activism and community?

Caprice-Kwai: Something that inspires me about the disabled community in particular is the support and love shown between everyone – there will always be someone out there that is able to relate to you and everything you’re going through! Another thing that inspires me about disability activism are the people who are brave and strong enough to share their stories with the world – if it wasn’t for many of those people, I wouldn’t be sharing my story today. 

Walela: The disability community is healing in many ways because I get to know people who understand a really specific aspect of my life and the potential struggles that come with being disabled. We don’t have to have the same disability in order to relate and that is something I find beautiful. What I also find beautiful is how vastly diverse our community is and how dynamic we are. As far as activism and organising, disabled people are some of the most resourceful-ass people I know. There are so many roles in this movement that many of us can fill. We are assets in organising. We think of things many abled people don’t because they aren’t required to consider them.

Alicia: Seeing people show up unapologetically in their lives. I love to see people with disabilities showing up, LIVING life to the fullest but also allowing themselves the grace to slow down when they need to. It’s comforting, it’s reassuring and often forces me to remember that my body is not something to be at war with and my life is beautiful.

Kenzie: At this point there are over 12,000 SSGz engaging, connecting, and sharing their stories on our platform. We get messages every day. When the world we live in has constantly told us we’re different, this isn’t normal, etc. I think the ability to share an intimate and vulnerable piece of yourself with strangers on the internet is a pretty wild and inspiring thing. 

Kenzie, what have you learnt from the Sick Sad Girlz community?

Kenzie: One big thing that’s been highlighted through the stories on Sick Sad Girlz is as much as we feel misunderstood, strange, impossible, or too much, there is an SSG out there who has felt similarly. The idea of “normality” is a weird concept to me to be honest. I don’t know many people who would describe themselves as “normal”, but even within those feelings of otherness or uniqueness, there is someone who has felt alone, or odd, or like they’re on the outside looking in, and hearing them put words to the feelings you’ve been experiencing whether openly or quietly is a really validating thing. 

The “default setting” whether online or IRL is rarely designed for chronically ill people or people living with disabilities, and that sucks. Community is not only how we find comfort and share our own stories, it’s also where we listen to others and ask questions and organise. It’s how we find empowerment and utilise empathy in figuring out how to improve spaces and make things more accessible in the wider world. 

While these communities are so essential, they can often feel quite inward-facing as the able-bodied world continues to ignore disability and chronic health conditions. What do you think able people can do to be better allies?

Alicia: Listen to people with disabilities whether their disability is visible or not. Having a chronic illness or disability can impact our experiences in more than just physical ways. Hear us when we say we’re tired, in pain and not capable of perhaps doing the things we once were or that we’re mentally exhausted. Don’t view us as a subsidiary of society; we’re still very much a part of society. Accessibility shouldn’t be an afterthought in the workspace, grocery stores, malls even events. So if you see something that could use fixing, speak up! Educate yourselves about different disabilities, learn the diverse spectrum of disability and learn how to unlearn your ableist views.

Wahlela: Listen to disabled people, especially colonised disabled people.

Following disabled people online because many of us not only share our narrative but also point to further resources - feel free to scroll through who I follow on my own page because there’s just a wealth of resources in general on many of those pages.

Take the time to unpack your ableism - which requires learning what ableism is and its manifestations. This is easier said than done because it’s an ongoing process - one I still am undergoing with my internalised ableism i.e. equating my productivity to my value as a person.

If you are an abled person who is also an organiser, ask yourself in what ways in your organisation ostracising disabled people and in what ways are you being inclusive. If we about freedom, it’s gotta be for all of us and not some of us. So what are you doing to support that we also can be participants in the struggle.

Lastly, here are just 4 great starting titles to work with:

Disability Visibility - Edited by: Alice Wong

The Cancer Journals - by Audre Lorde

Medical Apartheid - by Harriet Washington

Capitalism & Disability - by Marta Russell

And also watching Crip Camp on Netflix

Alicia, I love your honesty on the internet, about diet culture, your body, and chronicling the ups and downs of your life. Why is it important to you to remain so transparent in online spaces?

Alicia: We have enough curated presentations on social media. While pretty aesthetics and happy go lucky motivational speeches are nice and sometimes even helpful, what’s not helpful is conveniently skipping over the less savoury parts of life because it’s “not on-brand.”

I chose to be transparent because I know the feeling of thinking that I am alone in my experiences. I want to break stigmas and help normalise the conversations about the things many of us deal with. I want to encourage people to show up as themselves even if it’s unpleasant and understand that self-care and love is acceptable at any size with any body type able or disabled.

I never want to present myself as having it all together because I do not. And that is ok. There’s this idea that self-love and care have to look like being 100% happy with your body and yourself at all times but it doesn’t. It’s a work in progress for a lot of us and the journey isn’t linear!

And your looks are amazing!! What tips would you give to other plus size and chronically ill or disabled women that may sometimes feel self-conscious when dressing up and expressing themselves through clothing?

Alicia: You deserve to feel beautiful however it is you decide! Fashion does not belong to thin, able-bodied people. Fashion is a great way to express yourself and even help yourself feel better. I love a good pair of leggings and a t-shirt just like anyone else lol. But when I get dressed it definitely helps me appreciate that I still got it despite how things have changed for me.

If you’re self-conscious, remember to do what you’re comfortable with and challenge yourself when you’re ready. The most important thing is you feeling good in whatever you choose to put on your body.

Do you think Covid has changed people’s perception of disability and illness? A lot of changes have been made towards online accessibility and so forth —  but do you think people will be more conscious of the people that have been asking for these measures forever?

Kenzie: Honestly I go back and forth between being inanely optimistic and then skeptical that things will change, but I think progress will continue to be seen even if it’s not as quickly as we’d like. I do think we’re bringing up issues around disabilities and accessibility more with Covid and the lasting effects that it may have on people, I just hope that the empathy remains and continues to grow. 

Walela: I think COVID19 has brought a conversation to social media and larger platforms that hasn’t really happened before which is acknowledging how disproportionately dangerous this virus is for disabled/immune-compromised people. And so it begs the question: how do we practice social solidarity? I also think it made many people be like “shit well if disabled people are experiencing this during a pandemic, what were they experiencing before?”

I would disagree about changes being made surrounding online accessibility. What I have seen is that it’s becoming more clear to people that social media and the world at large is inaccessible. It’s becoming clear that many disabled people are often the ones to set the standard for the need to do captioning, alt text, image descriptions, and more. But ultimately, this shows the failings of these massive social media corporations who have the funds to make their platforms accessible and choose not to. So then it makes me question, who are these spaces intended for? I think there’s definitely a shift happening and even more shifts to come where people will start to prioritise disability justice. I am hopeful.

Caprice-Kwai, how does your work as a model tie into your disability activism and what has been your experience with modelling? 

Caprice: I always try to have my mobility aids (crutches) in my modelling pictures to normalise them in the media as well as showing them on runways or commercials which I feel ties into my disability activism. My experience with modelling has been amazing, I’ve been blessed to have had many opportunities as well as getting to work with inspiring people – sometimes it is a challenge as I have to manage my pain and how much I can realistically do, but I always try and push myself as much as I can.   

I truly believe brands within the fashion industry should have an adaptive range for people with disabilities as I know normal high street clothing stores aren’t always appropriate for us. I also think the fashion industry should cast more people with a range of disabilities so everyone has a chance to see themselves being represented. 

Walela, You’re very clear with boundaries on social media, which I think is something a lot of disabled / chronically ill people struggle with both online and off. I’m interested in how you maintain a good balance between speaking about disability, being non binary, blackness and the things you care about while also being very clear on where your lines are. How did you get to this point and what tips would you give to others in similar positions?

Walela: My social media is just a reflection of my experiences. It’s an open book of me navigating this world and I think because I have spent a decent number of years doing and continuing to do political education I’m able to connect my experiences within a larger societal context and share the sources that helped me. And I think that’s where the seamless nature of my social media comes from cuz it’s just really me. I ain’t tryna be an expert, I’m just here to share what I’ve learned and also to learn from others.

Boundaries were never easy for me. For one, they aren’t encouraged in our society. We don’t live in a consent-informed world and consent expands beyond intimate interactions, right? Consent exists everywhere. Fundamentally, we live in a settler colonial state - the basis of this government and what we know as the US is built upon the dispossession and genocide of Indigenous peoples and the enslavement of Africans. So, I don’t expect consent to be a priority or of value here because everything about this system relies on violating consent.

Boundaries, to me, are in a way consent. They help how I can navigate the world with a healthy relationship with myself and then with others and the community at large. So of course it’s beyond difficult to even conceptualise boundaries but also communicate and enforce them when we are told everywhere they will not be respected especially when you occupy multiple marginalised identities.

Therapy was what helped me get to that point last year, as well as support groups, having friends to hold me accountable, and using the internet and books to find more information on just how to make boundaries. This process has been a reclamation for me to take control of my life where I can. When I started communicating my boundaries, it was illuminating because it showed me who in my life respected me and who in my life relied on my lack of boundaries. I used to feel bad when people would be disrespectful but every time I kept sticking to my boundaries, I felt better, I felt empowered, and I had never felt that way.

As far as tips, I always suggest community guidelines being made as a highlight on social media - it’s just always been a helpful reference point and when someone tries to invade my space, be disrespectful, I point them that way. If that can’t respect what I outlined, they gotta bounce. And it’s the same shit in my real life, because if we can’t have mutual respect for each other - we don’t have anything. And that’s one of the boundaries I have with myself, to be accountable to what’s ultimately my feeling of safety. It’s hard. But it’s worthwhile.

What would be your advice to disabled and chronically ill people who maybe have not found the confidence in their condition, or generally just feel overwhelmed by the able bodied world?

Walela: You are not the problem. You are not a failure. You are not bad. You are not useless. We live in a system that relies on making you feel that way. Ableism is a feature of capitalism. Capitalism needs to exploit our labor in order to accumulate value. When our ability to perform labor cannot comply with the socially necessary labor time as deemed by capitalism, then we are considered disposable This is also why we see such a lack of resources for our community and especially the colonised disabled community. It's intentional. When I realised that, it exposed the exploitative and oppressive social relations that were underpinning the exclusion and disregard I was experiencing. I was intentionally made to feel this way. And for those feeling overwhelmed by an able bodied world, I would say what I said before but also add that we deserve a better world than the one we have, we deserve a place in liberation movements, we deserve dignity, and there are many people and groups working towards that now (and historically) - which gives me hope.

Alicia: Give yourself grace. Give yourself time to grieve. Many of us discount that when we acquire disability later in life; we have lost something and it’s ok to be sad about it. Feel your feelings, talk about it and then decide how you want to move through life. Adapting is hard but it is not impossible. Most importantly, you have no reason to feel shame when it comes to your body. You deserve to walk, roll, limp etc. into public spaces with the same confidence as an able-bodied person. You are not less than, you have as much value as anybody else. Be kind to yourself.

Kenzie: Self-acceptance is a real enigma. There are days when I feel like I’m being straight up betrayed by my body, and others when I can find gratitude and acceptance. It’s different on different days, and when I started realising what my triggers are, both on a physical and mental level, the easier it became to find acceptance. It doesn’t mean that the bad days stopped all together, or that I always know what causes a particular bad day, but it does feel more manageable somehow. And again, it always feels good to talk to someone who understands where you’re coming from — people who get those same feelings. SSG community meetings have been a great place to unpack the overwhelmingness of it all. 

Caprice-Kwai: My advice to those that have not yet found the confidence in their condition would be to try and embrace everything – your body may not be able to do the things you want it to do, but it still deserves gratitude and love.  Some days will be harder than others, but trying to find positive things in every day really helps.  We as disabled people are wonderfully unique in so many ways and we forget that.  On my down days, I sometimes find it hard to draw inspiration to be confident and not too overwhelmed but I always try to find the strength to remember that I am strong and inspirational all at the same time.  

What have you got coming out / want to shout out?

Kenzie: 1. Shout out SSG community for continuing to reach out and share your stories on the platform. I’m so grateful for you and so grateful for our meetings on Zoom lol they keep me sane. If you’re interested in joining the next one, or sharing your story, hit us up on our instagram @sicksadgirlz. 

2. My next single Losing Sleep is out next month X

Alicia: As always, my blog is my baby so be sure to check out my blog where new articles are posted every Sunday. You can also shop my cosmetic line directly on the site as well!  You can also find me on Instagram, Facebook and Twitter under @apyblog and Youtube.

Caprice-Kwai:I am currently working hard on my own fashion brand that I hope to launch next year (@bycapricekwai on Instagram). 

Walela: I would like to shout out Be The Match. Black people have a 23% chance of finding a match when it comes to receiving a life saving stem cell transplant. Stem cell transplants help patients with: leukemia, lymphoma, sickle cell, and more. The more people in the registry, the higher chances there are for people to find matches. If you are able, please register to become a potential donor by texting ItsWalela to 61474. It takes 5 mins, you get a swab kit in the mail, postage paid, it’s safe to do during the pandemic, and you can save a life.

Words: Ione Gamble | Cover Illustration: Gabe Mabazza