The message that my friend Alex sends me to announce her wedding summarises how and why we are friends. It is a twin-set of photos sent from a rooftop in Europe moments after the yes. There is the picture of her and her partner glowing with love against the sultry, dark evening sky. There is the obligatory close up of the bejewelled hand, the ring. All beautiful. But it isn’t just the instant and aesthetic communication I appreciate. It is the accompanying message that says everything to me: We’re getting married! Only looking at accessible venues. (red love heart emoji).
What this actually says between the lines is: Please come. We want you present on an important day in our lives. What that communicates on a deeper level is: You matter to us.
I’ve always been a romantic, a complete and utter sap, in fact, so despite my homosexual, gender-y, feminist misgivings about the institution of marriage, I know immediately that I will be there with bells on. Come Hell or High water and a stack of other enthused and determined turns of phrase. More to the point, I can be there. That’s the thing. As disabled people, we are used to operating on the assumption that we will not be able to be in certain places, at certain events, in certain roles alongside our non-disabled friends, having the same quality of experience. Not just excluded from out of the ordinary places, also every day ones: weddings or workplaces or holidays – on transport or even from housing – that’s a whole other story.
The other distinct possibility is that we will be asked, wanted, or expected to show up, but that being in the space in an equal way to our friends, family, or workmates will depend on detailed planning at our end. (Pre-) Accessibility thinking is a kind of mundane mental load that makes disabled people great additions to your strategic planning meetings but in any social spaces basically amounts to including ourselves because other people don’t know how.
I understand that there are a plethora of reasons why including disabled people might be seen as difficult, why people (yes, even friends and family) might feel overwhelmed by it. They don’t live it, they aren’t continuously confronted by it – they, therefore, will have less knowledge and strategies for what works, or they might just see halfway-there access as acceptable. Of course, the ”please- show- up -and-include- yourself-“ lukewarm brand of inclusion is better than not being thought of at all, isn’t it? Yeah, it is…usually. But it costs us something.
Money also often comes into it. When I am talking to a friend about their house warming in their “can’t-have-pets- or- put-pins in-the-wall- fourteen-steps to-the-front-door, run of the mill – but -still- hundreds of gold-pieces- per-week, Wellington-rental,” money feels like a more legitimate excuse than when it comes from the mouth of a Government bureaucratic talking about the education, welfare or health systems or the job market. But ultimately, the amount of time and money people are willing to invest in access comes down to prioritisation of their relative resources. It comes down to spending some portion of those on ensuring I can bring myself, be myself in a space. What I ask between the lines is this: Is my presence in the space, and is our relationship is important enough to you to be planned for? The cost of exclusion is more subtle and less concrete.
This is because disabled people carry most of this cost on our hearts.
More and more often, the sad shrug response I sometimes get when inaccessibility is raised as an issue grates on me. Particularly so when it is coming from those people who are otherwise switched on about other oppressions. It feels weak. It feels like a presumption that we don’t exist or need to be in other places: in my life, some of the places this really gets to me are activist or arts spaces or Government departments. Areas that either have a wealth of political analysis or the wealth of financial resources. Anywhere that could afford to include me if it were a priority. It feels like a passive acceptance of my exclusion and the exclusion of my disabled friends. One that I don’t have the luxury of indulging anymore – not if I am going to live fully. But pushing against often feels like a monumental task. It gets tiring.
I am aware as I write this that it was intended to be a significantly sunnier reflection on love and true acceptance, of feeling that and the huge part that accounting for my disability-related needs plays into that, for me, for other disabled people. The fact that I took the idea of inclusion and instead dove straight into writing about exclusion is telling. It is more familiar territory – and that’s despite my beautiful family and brilliant friends and my self-worth. That’s despite the concrete things I have like a home, a job, an income, a community. That’s despite being aware of all the work that went into establishing these things for me personally and also politically across years of the Disability Rights movement. That’s despite the sense of privilege I feel, knowing these are fundamental rights other disabled people have limited access to in their lives.
But it is that grim backdrop – and all the work we still have to do to ensure disabled people’s real inclusion, our full citizenship– that makes situations where friends have considered what I need to be present somewhere really mean something. I was going to write a love letter to the people who shoulder the accessibility planning for me, particularly to those non-disabled people who could choose to opt-out at any point but don’t.
It would be addressed to the friends who temporarily ramped their house so I could attend a party there and the other friend who took the hint when I told them this story. It would be addressed to the friend who wrote a complaint to a broadcaster about how they had discussed disabled people, so I didn’t have to, the friends who regularly let me rage and who rage back. Friends who make easy and appropriate links between my oppression and their own. Friends who hang out in bed with me when I am too low on spoons to move even if going out might be preferable to them. Friends who know what spoons are. Friends who learn to collapse my wheelchair and fit in in their cars. People, now friends, who take punts and give me jobs believing I can do them, friends who explain to other friends why their ableist language is problematic, friends who say ‘we’re not going there unless everyone can,’ friends who unabashedly move the furniture in bars, friends who dance with me not caring how I throw my body around, friends who take the piss out of ableists, friends who take the piss out of me. Friends who genuinely don’t find including me hard and who tell me so. Friends who pay attention. This is all a kind of makeshift love.
And this is a love letter because these acts of inclusion are in sharp contrast to lots of what makes up the daily grind of being a disabled person. I call it love because it feels like the appropriate antidote to often not being valued by much of the non-disabled world. It feels political.
At Alex’s wedding, I cry happily.