The Future Needs Us: Honouring the voices of trans and non-binary disabled people in Aotearoa

A few years ago, my colleague ia and I were sitting in the sun at People’s Coffee in Newtown, talking about our work in trans health. Ia had been asked to review a summary of disability-related data from the second Counting Ourselves health survey of trans and non-binary people in Aotearoa, including some anonymised quotes. A high proportion of trans and non-binary people who completed the survey were disabled (42%), much higher than the proportion of disabled people in the Aotearoa population as a whole.

Ia showed me some open text responses disabled participants had written about the challenges they faced in accessing rainbow community spaces. Reading the responses hit me like a ton of bricks. I felt the distinctive researcher pang I only get once every year or so, and I grabbed ia’s arm. We have to write about this.

A familiar flash of doubt moved across ia’s eyes. Do we have time for this? Do we have the spoons? But I knew they’d agree to do it, because, as well as being a data feeling, this was a personal feeling, and I knew ia was feeling it too. As disabled people (one trans, one queer) with close trans and non-binary disabled family members and friends, the data spoke to a theme that structures much of our lives - the intersection of being disabled and transgender.

We reflected on how much work it must have been for disabled people to write the responses to the survey. I remembered watching ia click slowly through the survey when they filled it out themselves. We would later read that other disabled participants had taken several hours, the majority of their day, and in one case a whole week, to complete it. We wanted to honour the participants’ energy, labour and commitment to improving the lives of other trans and non-binary people in Aotearoa.

With the agreement of the Counting Ourselves team, we decided to focus on analysing all the open text responses of disabled participants in the survey, to uplift their personal voices and complement the statistical analysis that forms the main part of the Counting Ourselves research.

Several months later, ia and I found ourselves at a retreat in Kirikiriroa with the Counting Ourselves research team. While the others worked on writing up the community report about the survey, ia and I loaded up on coffee, sat ourselves at the dining table, and began scrolling through the 500 pages of open text responses made by disabled people.

We were not prepared for the emotional weight of the task. Page after page, we saw our communities’ distress laid out before us. Whether it was experiences of medical discrimination, unstable housing, social isolation, or lack of access to gender-affirming care, the picture was bleak.

Some of this bleakness is depicted in the statistics about trans and non-binary disabled people in the survey, which portray the effects of structural oppression on their lives. The numbers are already grim for trans and non-binary participants in general, and the results for disabled people are generally worse than those for non-disabled people.

For example, disabled participants were more likely than non-disabled participants: to have experienced discrimination in the last 12 months (55% vs 35%); to have a healthcare provider knowingly refer to them by the wrong gender in the last 12 months (27% vs 16%); and to report high or very high psychological distress during the last 4 weeks (90% vs 66%).

It is a whole other experience reading the words of the people whose stories these statistics represent. At the end of several days of reading the data, ia had an autistic meltdown and shutdown. I had the worst migraine I’d had in years, vomiting on the plane home, my Fitbit emailing me to say I should probably see a doctor about my heart.

We felt that heaviness deep in our bones, but there was light in the data too. The results show the strength, community connectedness and resistance of trans and non-binary disabled people in the face of discrimination. Most disabled participants somewhat or strongly agreed that they: were proud to be a trans or non-binary person (77%); felt connected to other trans or non-binary people (71%); and had tried to make things better for other trans and non-binary people (87%).

When we organised the open text responses into themes, the two most positive ones were trans and non-binary disabled people’s pride in who they are and the joy they find in connecting with others like them. This makes sense to us, as we surround ourselves with disabled queer and trans friends, the best people in the world. We meet up once a week in the hub at Victoria University (lights low for ia, benches for Julia to recline) for what we call the Friday Rage Clusters, where we take turns to rage at the world and ‘check everyone is still alive’. One person jokes that the cause of his mysterious sore ankle may be transphobia. Another shares a new diagnosis of fibromyalgia (‘add it to the list’). A cishet able-bodied friend stops by and I say, sorry you can only sit with us if you’re gay or disabled, preferably both. Just kidding. Sort of.

We know that, together, we are what is getting us through. And now when people ask me how they can best support a trans or non-binary disabled loved one, I know what to say, based on what I learnt through this research. Foster their pride in themselves. Help them connect to community. Everything starts from there.

We wanted to write our report in a way that foregrounded the power of our communities’ voices, so we chose to present their words in the form of data poems combining the exact words of several participants to express a common theme. One of these data poems is the source of the report’s title, To Be Ourselves. It ends:

My existence itself is a form of activism
And I feel a lot of responsibility
For being all of who I am
This gives me meaning in life
And the strength to keep going
It’s magical
I feel honoured to be this way
And I feel the future needs us
To be ourselves

The report we wrote is available on the Counting Ourselves website. The results speak to us, telling us what we know to be true among our friends and communities, and we would love to know if they speak to you too. We are holding an online discussion on Thursday 5 June at 1pm to present the main findings of the report and provide an opportunity for community discussion about the issues raised. Register by 4 June if you’d like to attend. We’d love to see you there!

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