Sometimes, looking at things from a sideways angle is helpful...

Saturday, 27 April 2013

Disability and Grief

I’ve been talking a bit recently about feeling like I’m going through a process of grieving, with the worsening of my disability, and the more I use that language, the more it makes sense to me. For several years I was in denial, I used mobility aids as little as possible – I’d acknowledge that I was disabled, but I would neither think nor talk about the emotional impact that it had on me. It was just a thing.

I’ve lost friends and family members in the past. I think almost everyone has. I’ve been lucky enough not to lose anyone too close, but I know what it’s like, and how even after you think you’ve reached acceptance, that the person is dead, you see a letter from them that you maybe didn’t read properly, or a photo of them on your old camera, and you realise that they’re dead, and you’re never going to see them again. And you wonder maybe, and maybe just for a second, how you’re going to go on without them, then you realise you already have been, and you are going on.

I’m grieving at the moment, and it’s a complex process of grief – it’s not the grief for someone that has died, where they’re gone and that is final, however much time you spend wishing it wasn’t, and it’s not the grief for a friend you’ve lost over a shitty argument, where you know that it’s probably reparable, or that it was your mistake, or at least that they’re getting on with their life, even if you’re not in it. It’s a bone-set grief driven by my own body. I look at it and I no longer own it. Despite daily attempts to drag myself upright, always resulting into a dizzy collapse into my chair, despite constantly trying to move my legs when I’m in bed, as much as I can, however much effort, because it’s important and if I don’t things could get worse, they’re wasting away. My legs are wasting away, and they’re no longer mine, and that’s not the most painful bit – I feel like my future is as well. Of course, I don’t know. I don’t know if it actually is, what will happen, if I will be magically “cured”, but that makes it harder too, I can’t just let go and move through the grief because that’s always hanging over my head, what if, what if I can get better, what if this is temporary. God, let it be temporary.

People talk about there being plenty of accessible things to do, and maybe that’s true, but they’re not what I want. Even after someone dies you have other friends still usually, but you want that person. I don’t want to go and find accessible things, I want to go to the Alcazar de los Reyes Cristianos, I want to go to Madinat Al Zahra, I want to hop on a cheap coach to the beach, I want to cross the country for a conference on a whim. I know everyone has responsibilities and limited resources, but this new level of dependency has changed a lot for me. It’s only in limited circles that I can move between my wheelchair and other surfaces without help – if I want to go to a theme park, or the Fería, I can’t just for, I have to plan, organise, is someone coming who can help me, if not what does that then mean I can’t do, does that mean it’s no longer worth it, is it just going to be a painful reminder of what I used to be able to do? I feel like I’m carrying with me the person I’m grieving for – they’re constantly there, constantly reminding me what I’ve lost, and it’s exhausting. I’m beaten down, low on spoons, low on patience, low on energy. I don’t want to do things, I only do them when I have to, moments when I feel like myself, like the Old Matt, they’re few and far between, and who was that anyway, I was always made of the fragment lines of various traumas, and illnesses, I just feel like I’ve broken along those lines and new ones.

People always talk about a positive attitude, about how it could be worse, how nobody sees people in wheelchairs any differently, how everyone gets tired and has limits, how I just need to deal with it, and I’ve forced myself more and more to put a brave face on, but I don’t want to. I don’t think it indicates some level of internalised ableism to hate this about myself, to hate that my body is this broken, that *I* am this broken, and that I cannot function, and that regardless of disability and the social model my impairments will continue to impair me, I can’t be fixed by ramps everywhere, and lower counters, I can’t be fixed by some magic adjustment to make society accessible because my body doesn’t work. I feel like I’m  tireder every day, iller every day,  and I know I have good days and bad days, and that sometimes it seems like I’m getting better because I’ve learned some new strategy to save a spoon or two, but overall, I know I’m getting iller and I don’t want to be positive about this. I don’t want to be inspirational. I want people to hear me screaming and listen, I want people to tell me it’s okay to rage against the world, and myself, and to want to die rather than keep living like this. I want people to understand how I feel as a whole person, not either as a friend who just needs their chin kept up or as an inspirational acquaintance who should be regarded as having overcome so much because I haven’t overcome it, and every time people say I have they’re denying how I feel, my truth, my reality, which is that I haven’t, I’m not, and I can’t.

I cannot live with this dependency. I realise I have no choice, but I hate every second of it. I need my freedom, feeling trapped scares me more than anything, partly from being trapped in a body that felt wrong, pre-transition, and is only moving slowly towards feeling more right even now, partly from past experiences, but I need to feel like I can get up and go and I can’t any more. I can’t  dress myself, I can’t cook for myself, I can’t wheel myself far, I can’t just have that freedom to move any longer and yet I get lectured for being too dependent on people, it’s not about dependency, in some unhealthy way, because I don’t have a choice.

I didn’t get a choice in any of this. I didn’t choose to be disabled and I don’t want to be disabled. Fuck you, world.


  1. I greatly admire your honesty; it's never easy to admit to feeling shitty. I really hope it is just a dip in the road, but whatever's the case, I'll keep you in my thoughts and offer more practical help whenever I can. (I'm posting as "Anon" because I don't like admitting to people that I care about them!)

    1. Thanks Anon, I really appreciate that, whoever you are <3

  2. So, so much love and solidarity. Grief and disability is so fucking complex. Beautiful and rawly written post.

    1. It really is. Thank you and love and solidarity to you too...

      You need a blog like this