The title of this post feels uncomfortably like a public service announcement. A few experiences these last few weeks tell me that, sadly, that’s exactly what is needed.
It took me my whole 30 years to accept that I must help myself in any way that will make living with cerebral palsy easier.
I am between physiotherapists at the moment and my muscles are feeling the strain. I booked an appointment at a clinic in the same building where Squidge enjoys gymnastics so I left her with her dad (and my shoes) in the gymnasium and went up to the appointment.
I was asked to explain my reasons for seeking regular physio and cited the cerebral palsy.
I explained that I needed someone to physically help me stretch because my husband couldn’t bear the brunt alongside every day life.
“Can you not wear shoes? Where are your shoes.”
“My daughter’s playing downstairs with her dad.” I explained.
“You have a daughter?!”
The surprise was not kept from her voice. It hurt.
“Yes…” I said, nodding slowly.
“It’s just, I’ve only met one woman with cerebral palsy but she couldn’t speak or care for herself.”
I felt a familiar dread creep over me. The need for people out there to see every disabled person as the same. Except, I didn’t expect to have to explain to a professional the range of cerebral palsy, the different types.
She also asked about my studies. I don’t know why it seemed relevant, but she was polite enough so I genuinely believe she was simply curious. But I have never appreciated being an object of curiousity in this world. It’s just not necessary. After all, I’d been astute enough to make the appointment for myself, to recognise that physiotherapy is important to my maintenance. When I reported that I’m currently studying for my degree, another look of surprise came over her face as she congratulated me.
I do think she was trying to be sincere, but it is so easy to stray into patronising. And I wasn’t there to be patronised, just wanted someone to help me stretch. But she didn’t seem to understand when I explained that very little movement would translate to my left side. The response over and over was:
It was at that point that I absolutely knew this was not the professional to help me. I intend to make other plans.
It also took me my full 30 years to admit that a walker would help with my mobility and confidence. I still hate that I am in a place where I need to use it, but I certainly appreciate its presence more and more. I very rarely go further than the end of my street for some milk without conceding I will need the walker for support.
This weekend, I was walking to the library in town, my laptop bag strapped into the seat of the walker so that I had all my study material. There’s a pelican crossing halfway down the hill. I will always stop and wait for “the green man”. In her vulnerability, I fully expect Squidge to stop and wait. In recognising my own vulnerability as a disabled woman, I now appreciate that I must lead by example and do the same. I must not endanger myself. I have been reminding myself that a walker is a sign of such vulnerabilities. Anybody that sees me can rightly assume I have some difficulties.
So imagine my surprise when a driver with a learner plate on stopped at the lights, honked his horn at me and impatiently waved me across.
I stood fast. Firstly, as someone who is an anxious driver anyway, I would never insist that another driver, or indeed a pedestrian should move on my say so, much less as a learner! Out on the road, your life is in your own hands, you make your own decisions. So I made my own choice, knowing that the crossing signals backed me up and it wasn’t safe to go.
I wondered, what made this learner driver think that his course of action was helpful, or even appropriate?
The only conclusion I was able to draw was a sad one. Seeing a young woman with a walker didn’t signal to him that I might in fact have difficulties crossing the road in good time before the signals. What it in fact signalled to him, was that I did not know how or when to cross without his indication. But his action was not driven by concern for a vulnerable woman, it was driven by his own impatience and the assumption he knew better than I did, even though he clearly didn’t both to check the pedestrian signals I governed my movements by.
I struggle to walk. That realisation is hard enough. As I get older, I am more and more things I am not comfortable with. I am slower, more tired, more dependent. But one thing I am not as a result of having cerebral palsy, is intelletually disabled. Some CP warriors do have these disabilities, but some is not all. We are not all the same, our challenges are different.
I am perfectly able to be outside my home alone, to cross the road safely at a time of my choosing, to attract a marriage partner and to make the decision to have children. It is no-one’s place but mine to make any other assumption.
It really does concern me that in this day and age, any of my life actions have the power to confound and confuse others.
I was a person before I acquired any of my disabilities. I so wish that people felt more able to see the person I am before making judgements about what I am able to do.