If I had a dollar for every time someone said to me “but you don’t look sick!” I would be a rich woman. Unless one encounters me in the morning, before I’ve put on makeup and had my coffee, I look healthy and hearty. I’m the veritable image of good health; plump and ruddy, proverbially bright-eyed and bushy-tailed. But I am disabled; I live with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS). I need at least fifteen hours of sleep a day, and I constantly battle fibromyalgia, brain fog, swollen glands, an aching head, and dizziness. I say this not to solicit any sympathy or to bask in the lukewarm waters of self-pity, but only to illustrate the fact that not all disabilities are visible.
It’s important that we stop associating disability and chronic illness with the obvious; a wheelchair, a cane, a guide dog, a dialysis machine. There is no one way a disabled or chronically ill person looks. Disabilities range from the visible to the partially visible to the utterly invisible. There are 1.5 billion people on this planet with disabilities, both visible and invisible. Allyship is an integral part of community, of rendering the world more accessible, accommodating, and inclusive.
So what does it mean to be an ally? According to the Anti-Oppression Network, allyship is the “active, consistent and arduous practice of unlearning and reevaluating, in which a person of privilege seeks to operate in solidarity with a marginalized group of people.” There are as many different kinds of allyship as there are marginalised groups—such as women, people of colour, members of the LGBTQIA+ community, and so on. Today I’d like to address a few ways by which one might be a better ally for the disabled community.
First, it is important to educate yourself insofar as you can. There are countless brilliant resources out there, from documentaries to books to podcasts to memoirs. Acquaint yourself with the concept of “ableism”—discrimination in favour of able-bodied people. I recommend the film Crip Camp, Haben Girma’s wonderful memoir “Haben: The Deafblind Woman Who Conquered Harvard Law” and the Sociability app website. There are also myriad disability advocates, activists, and influencers on social media, including Annie Segarra, Jillian Mercado, and Emmanuel Ofosu Yeboah. Take it from me—as a disabled person, it can be exceedingly exhausting to be asked the same questions over and over again, especially when all the information is already out there, one Google search away.
It’s also vital to realise that the disabled community is far from homogenous. As in any community, we are all different. A “one-size-fits-all” approach will not fit all, despite the epithet. Listen to disabled people. Not everyone has the same views and preferences. Moreover, it’s important to understand that while a person’s disability may not define her, it may be an important and integral part of her identity. My ME/CFS diagnosis is a central part of my existence, but I am so much more: I am a sister, an artist, a writer, a pianist, a friend.
Integral to allyship is the acknowledgement of intersectionality, namely the understanding that different parts of a person’s social, economic, and political identity coalesce to create different models of discrimination and disability. A Black disabled woman’s experiences with ableism may be vastly different to that of a white man, for example.
Consider accessibility in everything you do. Is the dinner party you’re arranging accessible to your friend who uses a wheelchair? Does the photo album you’ve just uploaded to Facebook have image descriptions? Have you thought about providing a transcript for your latest podcast episode? Please be aware of the language you use. Some commonly-used words, such as “crippled” or “spaz” or “lame” have historically been used as slurs and can be hugely offensive and upsetting to disabled people. In keeping with this, don’t be afraid to use the word “disabled”!
It is also important to realise that the aids disabled and chronically ill people use are more than mere devices. Wheelchairs, service animals, interpreters, screen-readers, and other assistive technologies function as extensions of a person and should be treated with due respect. You wouldn’t stand on someone’s shoes or hang onto their jacket sleeve, would you? Don’t lean on someone’s wheelchair—it’s the same invasion of someone’s personal space. Similarly, don’t pet service dogs without the express permission of the handler.
Moreover, don’t question the validity of someone’s diagnosis if they vary in their use of assistive technologies. Ambulant wheelchair users, for example, are people who are disabled and use wheelchairs but are capable of walking in some circumstances. Ambulatory wheelchair users are often the target of severe harassment and censure simply due to the ignorance of the public, who think because the wheelchair user can sometimes stand and/or walk, they shouldn’t need the wheelchair.
Please hire and promote disabled people. Don’t presume to speak for us; we can speak for ourselves. As Congresswoman Ayanna Pressley puts it, “No one is voiceless; what they are is unheard.” There’s no excuse, for example, for hiring non-disabled actors to play disabled characters. A Quiet Place, one of the most engaging horror films I’ve recently seen, is a fantastic example of thoughtful and considerate casting. Deaf actor Milicent Simmonds plays Regan Abbott, a deaf teenage girl. As James Moore puts it, writing for The Independent, “Regan Abbott is a fully formed character. It’s her, not her deafness, that is central to the plot.” Amplify our voices; share what we write on social media, and prioritise disabled voices over abled voices when it comes to disability issues and advocacy.
Much has been written about “inspiration porn”—the tendency of abled-bodied people to view disabled folk as their own inspiration to rise above challenges. A quick scroll through Facebook reveals countless videos and posts about people who have “overcome” their difficulties. Look at this cute little girl running around with her purple sparkly prosthetic leg! How amazing and inspirational is this young actor with Down’s Syndrome? Wow, this girl in a wheelchair was elected prom queen! The implication is clear, if not explicitly stated in the captions: “If disabled people can do it, what’s your excuse?”
Australian disability activist Stella Young coined the term “inspiration porn” in her 2014 TEDx talk to describe this kind of messaging around disability. Young intentionally included the word “porn” in the phrase to underscore the off-putting nature of this objectification. Viewing disabled or chronically ill people with undue sentimentality or pity, and framing their achievements—or very existence—as an uplifting moral lesson may be well-intentioned, but it can also be deeply exploitative, objectifying, and just plain embarrassing for the disabled person. It sends the message that you have lowered expectations for disabled people from the start. To quote Carol Glazer, president of the National Organization on Disability, “the whole concept refers to the fact that most able-bodied people think of disability as such an unspeakable condition that you can only think about it in euphemism.” Most people with disabilities—myself included—think of ourselves as normal people, who may or may not need certain adaptations, modifications, and assistive technologies to live and thrive. There’s nothing unspeakable or inherently inspirational about our disabled lives.
But most importantly, be a friend first and foremost. What I appreciate most from my friends is their thoughtfulness, kindness and consideration. Due to my ME/CFS, I'm notoriously “flaky”—I frequently am forced to cancel plans due to a fatigue flare-up, or severe post-exertional malaise (PEM). But those who know and love me don’t take this personally. They continue to invite me to activities and include me in all their plans. They don’t scold me, patronise me, or guilt-trip me. Instead, they ask how they can help, and offer to run errands, or change plans to accommodate my waxing and waning energy levels. It means so much to me.
Becoming a good ally to disabled people is an ongoing process. It’s something I continue to work on each day. How can I be a more thoughtful and considerate member of the disabled community? I certainly don’t have all the answers. I am indebted to so many wonderful disabled activists, advocates, academics and researchers.
This article is by no means an exhaustive list of how to be the “perfect ally”. After all, the “perfect ally” doesn’t exist. Everyone is human; we all make mistakes and continue to learn and grow. But remember this: it’s more important to be an imperfect ally than to not try at all.