Intersections of Queerness and Disability

This is the manuscript from a talk I held at the Young Adult Kidney Group’s Virtual Weekend September 13th, and was part of a panel on Diversity and Chronic Kidney Disease.

You might have heard about «coming out» as a concept for telling family and loved ones about being gay, bisexual, trans, pansexual or any other gender identity or sexuality identified in the LGBTQA+ acronym. However, «coming out» has also become a way of understanding the process of realising, acknowledging and telling others around you about your own disability. Queer disability activists, such as Annie Elainy, have been writing about how coming out as disabled is similar to coming out as queer. On this panel for Diversity and CKD I will talk about my own process of coming out as queer and coming out as disabled. Queer as some of you may know, is a term used as a more general identity of being gay, bisexual or other, and is an umbrella term for the LGBT community. My reason for using this term for myself, will hopefully be made clear in this talk.

In October 2011 I was admitted to the University Hospital in Oslo, together with my kidney donating uncle, to receive my new kidney. September the following year, I moved to the UK. It may come as no surprise that it was hard (and slightly ridiculous) to move to another country so soon after the transplant. And I would not recommend it to anyone. It was the start of a year without energy, friends or self-confidence.

Nevertheless, it did teach me that even if somethings seem impossible, it is not necessarily so. That even things that seem out of my reach, can be done, if planned accordingly.

However, these possibilities come at a cost, and sometimes the cost is not worth the outcome.

So, moving so soon after my transplant also taught me another lesson - one quite the opposite of reaching the impossible - A lesson that I am in no rush. Being a young person with a chronic illness or disability, we can often feel as if our illness is in the way of our own growth. As a 32-year-old young adult still climbing the ladder towards adulthood, I often feel as if I am missing out on reaching certain milestones, such as an education, a career and a family.

And without these milestones I somehow feel less of a person adding value to the world.

But rather than growing on the terms of other abled bodied people around me, I needed to grow with my disability. I am in no rush, because even if the abled bodied society surrounding me is achieving these milestones, even if all my able-bodied friends are getting degrees, jobs and babies, I still need to do them in my time. I cannot rush them.

When I was born, my mother told my dad I looked like Mother Theresa. This was not a comment on how generous or wise I seemed, but rather an observation of my tiny premature body and wrinkled face.

I was born with CKD, but it was not until my 22nd year, at my nephrologist’s office, I was told I would need a kidney transplant - within six months. This was the first time I heard the words «you» and «transplant» in the same sentence.

As a child I was told my 75% kidney function would be stabile throughout my life. I was still however, a sick child. I developed an infection that turned into severe asthma at a young age, and I struggled with bladder problems. At 14 I was diagnosed with Chronic Fatigue Syndrome. It all came down to be «somehow related to CKD». On my doctors note, which I heavily used in my defence, it just said «low kidney function».

These were illnesses that undoubtedly would be classified as disabled experiences, but I did not see myself as disabled. Disabled for me was something inherently negative, something others experienced, those who lived in institutions and needed constant care. Of course, these ideas I had about disability were dehumanising and plain out horrible and were developed in my mind by living in an ableist society.

It was not until my 22nd year, having to come to terms with diets, dialysis and eventually a transplant, that I was forced to face my own disability. Both in the sense of disability as a medical term used to describe my bodily limits and disability as an identity to claim as my own.

During this corona-filled summer, navigating lockdown and covid-19, I found great comfort in the San Francisco based online weekly event: Crip Camp. A series of lectures and conversations that would be available on Zoom every Sunday.

One Sunday Rabbi Julia Watts Belser was part of a panel discussing disability and faith. She said something that profoundly resonated with me, and the search for my place in this world. She said:

«Disability is a vital part of how I know myself. How I have come to know my world. It is central to my embodied sensibility, my politics, my passions. Strip away disability, and you strip away a depth of my identity. »

The year I had my transplant and had to come to terms with my new body, was also the first year I went to the Norwegian organisation for young adults with CKD and transplants’ annual youth gathering. It was in beautiful Lofoten in northern Norway, where the sunlit night lays over the fjords and mountains. I was still very ill after the transplant and worried I would be the only one. I was not. The amount of bodily differences and diversity in the group became an epiphany to me. I felt there was definitely no reason for me whatsoever to hold back and hide my illness during this trip. I was one of many.

Until that trip, I had felt as if my illness was something I needed to hide. Something that was my own burden and no-one else’s. Until my transplant, my illness had mainly been something I could have and be when I was alone in my own flat and my own room. Something I could sleep through.

However, it had become apparent to me that illness after my transplant was not something I could hide anymore. I looked as if I was ill, and there was no hiding that. My new medications had made my invisible illness very visible. My face was all bloated, my eyes constantly tired looking. And the incurable hunger added a lot of wight. I was undoubtedly disabled. My whole body screamed disability.

Now, this period of feeling visibly disabled reminded me of something else.

During the period of dialysis, transplant and figuring out my disabled identity, I was in a relationship with another woman. When she would visit me in the hospital, people assumed she was my friend. That was until the day we decided to walk hand-in-hand into the transplant units dining area for the daily collective dinner. From that day, everyone knew that she wasn’t just my very good friend, who enjoyed visiting me. I became visible.

I came out as gay when I was a teenager and had met a girl who rocked my world. At that time, we could walk hand-in-hand, and everyone would know.

However, I had told my parents years previously. But not in the «mom, dad, I’m gay»-way. It was more like a process with several «coming outs’». When I was 16, I was in the bathroom preparing for a date with a girl I had met online. My mom walked in and asked where I was going. I said I had a date with a girl. That was the first my mom ever heard about my queerness.

However lovely and understanding my parents were, there were still people I didn’t tell. My grandparents never knew. After several relationships with women, some whom met my grandparents many times, my grandma and grandpa died of old age within a period of two weeks. In some ways I think they always knew, but I am not so sure if they would have been OK with it if I had openly told them while they lived.

Even though we’re living in a society that mostly accepts at least the L and B and G in LGBTQIA+, I was constantly facing a difficult enemy - namely shame. Shame was a hard feeling to get rid of. It was there when I walked hand-in-hand with my girlfriends, and there when I told or avoided to tell new friends about my sexuality. It was there when I was single and there when I was coupled up.

Shame became the biggest struggle to overcome - when generally society accepted me for who I was, it was mainly myself who became my biggest critic. The shame I felt manifested in ways of understanding my own sexuality.

For example, I was not like «those» gay girl who looked super gay all the time. I was just me, plain and simple. I did not need to dress up my sexuality and wear my love for women. It was a tiny part of my identity. I was first-most Birgitte. When people assumed, I was straight, something most people did, I would see it as a compliment. It meant that at least I did not look gay, therefore I was still attractive to men.

All of these feelings were rooted in an internalised homophobia. I was scared of myself. When you internalise homophobia, you also become homophobic. So, within all my insecurities, I was undoubtedly homophobic towards other LGBTQIA+ people. Something I am not proud of today. But it seems, talking to queer friends and reading queer texts, that this is not uncommon. Coming out is a lot more than telling the people around you that you are queer, it is also accepting your own queerness, and overcoming your own shame.

And therefore, I wish to end this by talking about how coming out as disabled is similar to coming out as queer.

Assumption is something that clearly connects the two. When you are a person with an invisible illness, people assume you are abled bodied. There are ways you can «dress up» your disability, either because you need to or because you want to be more visible as disabled. These can be using a cane, walking equipment or a wheelchair.

Similarly, heterosexuality is most often assumed as a person’s sexuality. But also, with qeerness you can dress up or make yourself visible. The hand-in-hand statement in the hospital is one example to make visible your queer identity.

When I met my current partner, who is a man, I had to come out as bisexual. This was another coming-out-process. One I was not aware existed. But as I went on with my life in this new relationship, my queer identity started fading away. People now more than ever would assume I was straight, and there was no longer a hand I could hold to make this visible. My invisible sexuality became more invisible. And I could be OK with that if it was not for all those years I had invested in getting rid of my shame and building my identity.

In the same period my body started getting thinner, I was more used to the medications and had changed some of them. My morning and evening cocktail mix had been perfected. I was still often sick, but my sickness could now be hidden, if I wanted to. But in the same way as my sexuality had been a hard-earned identity, I was not ready to lose another identity I had put literal blood and sweat into making my own.

For my sexuality to become more important in my life, I decided to claim queerness as my own label. Queerness meant I could be whoever I wanted to, that even though I had identified as a lesbian most of my teen and young adult life, I could now be bisexual without having to re-identify my earlier self.

In the same way as with my sexuality, it became more important than ever to claim disability as an identity. I wanted everyone to know that even though I looked well, I might not be. The ways my disability started showing, or rather how I started showing my disability, became little revolutions in my mind. One thing I did, was that if I was ill while with people, I would not, unless absolutely necessary, leave them to rest alone. I would rather rest on a sofa, a floor, or wherever I felt comfortable, while meeting people.

Another way of claiming disability was to allow myself to rest and not feel guilty about it.

Feelings of guilt and shame has been present in both my identities as disabled and queer. And they are still there, alas luckily less often now. It is through accepting and learning from the feelings of shame that I am able to come to terms with my identities. Shutting down the shame, has only created more guilt about being shameful. Now I let the thoughts enter my mind, and then exit. It helps to have a partner who calls me out whenever I am are saying something homophobic or ableist. And it helps to have a community to rely on and share experiences with.

Thank you.