trapped | DisABLEd Mummy

I have just begun reading Disability Visibility by Alice Wong. It’s a collection of essays from disabled people throughout the United States in order to bring together and reflect the real-world lives of disabled people living in the 21sr Century.

It being based around Americans, what with their entirely different ideals and health system, I did not honestly expect any of it to resonate. But I have become an avid reader this year and am loathe to give up on any text, especially given that the written word has always held that unbeatable power to share new ideas with me.

But, I have to stand corrected. One of the essays has spoken to me deeply. Firstly, June Eric-Udirie, whose essay was titled “Waiting to be Healed” talks about her family’s relationship with God and how she grew up so confused about what her disability meant in God’s view.

I have never held a religion. I do not believe in prescribed doctrine, only personal spiritual fath that is entirely individual. My mum however, was raised within a religion. She was so conflicted, as June reports when she found herself parenting a disabled child. What had she done wrong? What could be done to fix it/me?

I grew up around conflicting messages around God. God does not make mistakes. God will fix all that is not perfect if only you believe in Him enough. As such, my disability became a source of shame. I prayed to be healed, then when that didn’t work, I compromised for time, then less time to know what it was like to [see] and not miss a step and trip.
June Eric-Udorie “When You Are Waiting to Healed”, cited in Disability Visibility, edited by Alice Wong

I do not for a moment think that any parent of a disabled child consciously means to pass on a sense of shame, but I complete empathise and resonate with June here. While my mum unspokenly felt that God had punished her for sins she never named directly to me, I grew up with the constant feeling that my differences made me a burden and if only I could be fied, be normal then I wouldn’t pose such a problem anymore and my mum might feel more able to allow herself to love me for the person I was, not just the problems and stresses I presented to her life.

I did not feel I had the right to claim a disability, when I was waiting to be healed. To claim the disabled label when I didn’t feel disabled enough felt disingenious.
June Eric-Udorie “When You Are Waiting to Healed”, cited in Disability Visibility, edited by Alice Wong

I have never been waiting for God to fix me. I remember 2 events distinctly related to religion as I have experienced it. A preacher on the street in Bristol when I was a child, on my way to a hospital appointment to be poked, prodded and talked about above my head, called out to my mum: “Jesus loves you.”

When his eyes fell on me, they went all the way down, taking in my twisted limbs. I remember his words exactly, because whilst well-intentioned, they in fact twisted in my gut, slicing through my sense of self.

“Don’t worry. Jesus loves you too.”

I remember looking up at my mum, hurt and confused. I’d clearly seen him look down at my legs. Why on earth would my legs mean I needed to worry about God loving me? Hadn’t he made me like this? Wasn’t he supposed to love all His children? I have never, ever been able to forget this moment, because it has put me at odds with God ever since. I know lots of people find comfort in God when the world has othered them and their body in this way, but I have never been able.

My mum, although never having said so to me, which I think would have helped with my self-image to be honest, I think, felt similarly. I remember a religious doorstepper knocking a few years later and telling Mum that God loved her. I often wonder if these exact words are rehearsed and if their reoccurence got Mum’s back up, She pulled up her stool and sat down. I don’t even think she broke eye contact.

“If God loves me so much, how come he’s let my dad die of cancer and made my little girl disabled?”

No answer was forthcoming and Mum closed the door, possibly quite literally on her own faith, because God had seemingly abandoned her.

But I knew the most important thing I had to do [before I turned 18 next summer] was to not be ashamed of who I was. The embarrassment I felt every time I missed a step… was a thing I had to let go. I had to practise forgiving myself. Throughout my teenage years, I had never been given the opportunity to learn to live with my disability and move through the world on my own terms, because everyone around me was scared something bad would happen. But nothing bad did happen…. and I felt like a winner.
June Eric-Udorie “When You Are Waiting to Healed”, cited in Disability Visibility, edited by Alice Wong

I can’t help but keep reading over and over this quote. Because June somehow grew into a young lady with enough self-awareness to know that she mattered, whether or not she was perfect or normal in the eyes of the society around her, her mother or even God Himself.

I did not.

My mum’s agony became mine without a word said about its transference. I grew ashamed of my body because it wasn’t right, because the way it looked and moved made me stand out, when all I wanted in the world was to blend in behind everyone else, unremarkable and completely unnoticed. Because the fact that I was remaked upon and couldn’t go unnoticed was completely outside my control and I learnt to despise anything being outside my control. I learnt to be weighed down by it all and turn in on myself with hatred, because I wasn’t normal.

I never got to be privvy to my mum’s feelings about my disability and limitations. She buried her pain and guilt at birthing and parenting her disabled daughter deep, but it did come out in her emotional distance from me. She seemed unable to celebrate my achievements and I believe they were kept back by the level of pained responsibility she felt for my limitatons. I don’t think my mum was ever made to feel like I would live an ordinary life like she had, marriage, kids, domestic responsibilities etc and as such, she felt unable to relate to me as Jo.

I appreciate more, since her death and an awful lot of therapy that negative emotions have all the power we give them. I know my mum loved me. But I do not think she felt much able to love herself, as a result of her own upbringing and life experiences, of which I was only one, but a chronic one if you will. My needs, my disability and the resulting pressures of her family, her life, her mental health never stopped coming.

And so, in my own adulthood, a fair bit later than June did, I have learnt that all I can ever be is what I am. In this mind, in this body. But I am allowed to use the voice I was gifted to strongly state that neither of those were of my choosing. I will never stop saying so because there are things in my life I am glad to have chosen for my own, namely my husband and my children.

But this book has also raised the question of whether disabled people want to be fixed. Lost to my depression until the very end of last year, for myself, I would have stated an unequivocal yes. I’ve always wondered what I’d be like on fixed legs, given that I do not know what to do with them. For 2 weeks after my Achiles tendon operation when I was 6, I was able to put my feet flat on the floor and my legs felt rigidly held in a straight and strong position like never before. I felt so powerful. Then, one of my muscles seem to ping and it was just all gone. Did God do that too? Had He decided I was undeserving of being normal?

But now I know that disability is not all I am. I am a mum. I am a wife. I am a sister. I am a friend. I am a learner. I am a goddamn trier. I am strong. And maybe those last few are what cerebral palsy was destined to make me. Maybe it is in fact all of them, because if I was not me, disability and all, then would I still be my husband’s wife? Would I still be mother to my daughters?

Because for all the countless, frustrating times I’ve tripped and fallen and spent days in pain with useless limbs, or felt unseen by services purporting to support me access what everyone else can and do independently and without question, or just felt completely unseen or misunderstood by the world at large (see: “Oh, you’re so brave” type comments that serve no purpose but to infantilise actual living warriors!) I can say now, without the self-loathing wrangling to loom large, that I choose this life because I choose them. Because of them, I have bought myself to a place that June already knows: