When I was little, I used to say, ‘Why did this have to happen to me?’ I was unaware that cerebral palsy is more common than I believed; it affects three in every thousand live births. I was the only person among those I grew up with who had cerebral palsy. Other people might have had other disabilities of which I was unaware, but I was the only visibly impaired person. I played the victim as a child, felt really sorry for myself, and – when bad things happened to me – always asked why my disability had to happen to me. I still remember feeling this way when I was nineteen after I’d had a particularly bad day. I was running to get the bus and, when I got on, a stranger brought up my obvious impairment and said, ‘I think you have what I have’ when I was certain that we did not have the same disability. I don’t remember if I snapped at her or I chose not to say anything, but I do remember going home, sitting on my bed, and sobbing. When my mother offered me some comfort, I was so humiliated that I couldn’t even look at her. I said, ‘Why did this have to happen to me?’
In the last few years, ‘why did this have to happen to me’ has become ‘why am I not better yet?’ I have come so far, I have worked so hard, I have done so much, and I have committed to the work. Why am I not better? I understand now that I will only get fully better if I force myself to do things of which I am terrified, and I know now that – whether I will admit it to myself or not – a small piece of me does not want to lose my identity. I now ask different questions of myself and my disability now that my perspective on my disability has shifted.
There are still times when I say, ‘Why did this have to happen to me?’ I ask myself this question when I’ve had a tough day and come up against a physical obstacle, I see someone easily doing something I can’t do, people don’t take my disability into account in certain situations or forget that I can’t do certain things, I have falls, or am made fun of for my impairment. I try not to be self-pitying or to indulge in the ‘victim mentality’ that I used to play up all the time when I was younger, but I won’t deny that there are times when I say things like why did this happen to me, why am I not better, and when will I ever get better.
The world doesn’t owe me anything, whether or not I have a disability or whether or not I get better. The world doesn’t owe anyone anything. Even if I do recover entirely, I will still have bad days, I will still suffer falls, I will still come up against challenges, and I will still face disappointment, unhappiness, loneliness, anxiety, and fear. Everyone will. Completely curing myself will not make me somehow immune to bad experiences or entirely invulnerable or exempt from anything. It’s a hard thing to accept, but it’s the truth. I have tied the idea of curing myself and the desire to cure myself to my own self worth. I grew up believing that my disability made me unworthy. I now believe that the fact that I have not entirely cured myself makes me unworthy.
Brene Brown, a social worker and academic who gave a groundbreaking TEDx talk on vulnerability, has a picture of herself on Twitter that reads, ‘I’m imperfect and I’m enough.’ I believe this is what I have to truly internalize in myself. Curing myself will not make me perfect or worthy. I will always be imperfect. Everyone will. I have to believe that who I am now and who I will become – cured or not – is enough. Dr Brown said in her TEDx talk, ‘When we work from a place, I believe, that says “I’m enough” then we stop screaming and start listening, we’re kinder and gentler to the people around us and we’re kinder and gentler to ourselves.’ This is a place from which I need to work.