How I became disabled in 2020, even though I’ve lived with disabilities since 2013

Despite having lived with my vision and hearing impairments since 2013, and immunosuppression since 2015, I’m finding that I’m only now, in 2020, seeing myself as “disabled.” Prior to 2020, chronic illness and disability felt like an important part of my life. There were some rough days, fears about the future, occasional flare ups of medical trauma symptoms, and ways that I felt like my life was hindered or made more complex by my disabilities. But I still somehow never saw myself as a disabled person!

It wasn’t a conscious choice to resist the word disabled. I just hadn’t thought any of this through. This year however, I’ve most definitely transitioned into owning “disabled” as part of my identity. I’ve started using the word “disabled” when I talk about myself, and I’m even feeling comfortable about doing so now.

How was I so blind before?

I’ve been wondering how I managed to have significant disabilities for 7 years without seeing myself as disabled!

Invisible disabilities

Other people seem to have been in on this too. I’m regularly told that I “don’t look or act disabled,” and that people “forget” that I’m blind/ hard of hearing/ imunosuppressed. This is of course a common response when your disabilities are relatively invisible and you can pass as abled.

Having disabilities that are invisible has its benefits. Like when I’m tired of explaining my disabilities, or don’t feel like dealing with people’s pitying responses or intrusive questions, then I can make a choice to pretend I’m not disabled. And I don’t get people staring at me. But the other side of the coin is that it can make for some tricky social misunderstandings, and when people think i’m another abled person like them, they’re less likely to filter their ableist views when they’re speaking to me!

Internalised ableism

I also have a sense that a part of my late integration of my identity as a disabled person has also been about my own internalised ableism that we’re all trained into. I can offer myself understanding and forgiveness now for not wanting to take on an identity that the world has taught me means things like weakness, burden, ugliness, abnormality, weirdness, worthlessness, and disposability. I certainly never consciously thought and definitely never said these things about disabled people, but I can see now that these may be some of the ideas that made me reluctant to want to identify as disabled. I’m also glad to have become aware of this now, and to be able to choose to stand against these dehumanising ideas about disabled people – both within myself and around me.

At first when I began to use the word “disabled” to refer to myself, I noticed my discomfort about the word. Not discomfort about my actual disabilities, mind you, but discomfort about using the words “disabilities” or “disabled.” It’s been interesting to notice myself wanting to edit those words out and use a different way of talking about my disabilities. Or I’d find myself thinking that maybe I shouldn’t be talking about being disabled at all. It makes other people feel uncomfortable. It’s a bit of a buzz-kill, really. (Have a listen to this wonderful podcast, also available transcribed, for more about why discomfort with using the word disability may reflect internalised ableism).

My internalised ableism has been particularly evident when I’ve been writing for my Art + Therapy Facebook page or newsletter, and my gallery bios for recent art exhibitions that I’ve been a part of. I’ve noticed thoughts like, “Do you really want people to know you’re blind? Will they only buy your art because they feel sorry for you? Will it place you in the ‘disability artists genre’ and prevent you from being a part of a bigger world of art and artists? Will it make people feel uncomfortable or sad so they unsubscribe from my newsletter or social media because, even if they like my art, they don’t want to hear about my sad things? Okay, so pick just one disability to list in your bio. It sounds super-sad if you include all of them.”

I’ve even thought to myself that maybe I should have rather had two separate websites and sets of social media accounts and newsletters so that people who want to follow my art but not my “sad stuff” can just do that!

Seeing myself more clearly

I’ve also been wondering now what it is about this year that’s brought me to seeing myself and my disabilities with greater clarity.

The effects of Covid-19

The Covid-19 virus definitely played a role in my realisation that I’m a fully-fledged disabled person. Covid-19 has altered the meaning of my immunosuppression. I feel way more vulnerable in a pandemic than I felt before.

Masks and keeping distance from others have also increased the felt impact of being blind and hard of hearing. I’m so grateful for those who take care of me by keeping their distance and wearing a mask, and it’s also much harder to follow conversations under those conditions.

The media and social narratives that have emerged around Covid-19 have also really exposed how society thinks of disabled and chronically ill people – people like me – as inconvenient and disposable. Feeling that painful message being directed at me has provoked me into being more aware of these ableist narratives, and clearer about my own identity location and opinions in those conversations.

My son’s experience of my disabilities

Another big factor has been watching my son beginning to notice how his mom and our family life are different from many others, as a result of my chronic illnesses and disabilities. Honestly, this has been the most impactful and the hardest for me.

He’s had to homeschool and have a very limited social life for much of this year, to keep me safe, and my blindness means I can’t drive anymore. In South Africa we have no safe public transport alternatives, so not driving severely constrains the activity options available for my son and I during the week while Andy is working. I grieve for how his life has had to be restricted because of my vulnerabilities and disabilities.

Seeing, grieving, and accepting more fully

Though I felt grief and fear when my disabilities were first diagnosed, in some ways it feels like I’m really seeing and accepting my disabilities for the first time. It’s been a hard, often grief-stricken process of acknowledging and deeply feeling my losses, and also all of the losses and additional responsibilities and worries that my disabilities mean for my family, including our 7 year old son.

And yet, it’s also had the flavours of liberation, courage, truth, and a kind of home-coming. Grief has a way of doing that, doesn’t it?

What does it mean to be disabled?

Now that I’m owning the word disabled, I’ve started to explore what it means. There are a lot of different ideas about what being disabled means – many of which, as I’ve mentioned, are not kind to disabled people. Part of exploring what it means to be disabled has been about unpacking these unfair social narratives, and taking a more conscious and overt stand against ableism.

An individual approach to disability

Another way that the meaning of disability may vary is in respect of different people’s specific illnesses and disabilities, and the specific effects they have. I do think it’s important to understand that there’s a lot of heterogeneity amongst chronically ill and disabled people, and to take care to understand the specific effects of specific illnesses or disabilities on individuals we care about, so that we can make practical changes to facilitate inclusion.

However, this individualistic perspective doesn’t speak to our different circumstances and social identities that intersect with our disabilities. Focusing on individual disabilities also places the onus on disabled people to explain ourselves and our needs to others. In that sense it’s other-ing. This individualistic perspective also denies how social relationships and politics shape our experiences and abilities. I’ve recently come across a definition of disability that’s new to me, and I love that it shifts the conversation to understanding disabilities within a relational perspective.

A relational approach to disability

In her article, The Full Affirmation of Disability Justice, Shannon Dingle quotes this Indigenous definition of disability.

“Indigenous scholars and activists Dorothy Lonewolf Miller (Blackfeet) and Jennie R. Joe (Navajo) suggest that some indigenous nations have defined what might be called disability in relational rather than bodily terms. In indigenous cultures, disability occurred when someone lacked or had weak community relationships. Though individuals might experience impairment, disability would come only if or when a person was removed from or was unable to participate in community reciprocity”

Looking back on what I’ve written here about the factors that contributed to my shift from living with disabilities to seeing myself as disabled, I find it striking that those factors are all in some way about my relationships with other people. I am more or less impaired by my disabilities, depending on how others behave, how others talk, how my disabilities and illnesses impact others, and how all of this affects my relationships with others and my perceived and actual ability to participate in reciprocal ways.

It’s all about how we do life together

Going by this Indigenous definition of disability as weak or broken relationships, it seems to me that there are many people who are disabled, yet live in fully capable bodies. Equally, there are chronically ill and disabled people I know who live lives rich in reciprocal relationships.

The meaning of reciprocal relationships

Reciprocal means that there’s no sense of one person being the “helper” and the other being the one needing all the help, or “the burden.” Instead, reciprocal relationships recognise that we each bring different abilities and qualities to our relationships. I want to read more from these Indigenous scholars… I don’t know exactly how they define reciprocal, but I wouldn’t be surprised if their definition of “reciprocal” includes generalised reciprocity. I would certainly like mine to.

Generalised reciprocity “refers to an exchange that incurs no calculation of value or immediate repayment of the goods or services. This usually happens among close kin and friends; e.g., !Kung hunters sharing meat with other members of the family or buying a cup of coffee for a friend. It acts as a form of social security among kin—sharing with family ensures that they in turn will share with you. Generalized reciprocity has an element of altruism to it. Think about a person who makes a bunch of sandwiches and then hands them out to the homeless. That person is distributing food without expectation of repayment.”

This Covid-19 pandemic highlights for us all how much we depend on each other. For all of us, our safety depends on how we do or don’t look after each other. For disabled and chronically ill people, this is even more true. For all of us, our abilities and disabilities are formed in relationship with each other, through the degree to which we invite and welcome each other into reciprocal relationships, where we all offer what we can, when we can, in support of each other.

Some of what I’m thinking about next includes…

  • Where do I experience reciprocal relationship, where there’s give and take, and full participation in both directions? What kind of care do these reciprocal relationships need, for them to be nurtured and sustained?
  • Where there are relationships or community spaces that feel less than reciprocal, how might I like to challenge or change that?
  • Where and how can I play a role in fostering a culture of generalised reciprocity in the spaces I’m involved in?
  • What kinds of ideas (in general, but also specifically about disability) do I notice, within myself or our cultures, that seem to get in the way of asking for, inviting, or accepting other people’s generosity or contributions?
  • What kinds of cultural ideas and ways of living seem to get in the way of seeing each other’s support needs and prioritising contributing to support each other where we can?
  • How can i take a stand against ideas that get in the way of healthy, reciprocal relationships?

Photo by Tim Mossholder on Unsplash