Alex Taylor was born 16 weeks early, weighing only 900 grams. To mark the UN's International Day of Persons with Disabilities , the 25-year-old journalist who lives with cerebral palsy pens a letter to his young mother as she and her husband stood by his incubator not knowing whether their son would survive - and if he did what kind of life he would lead.
Dear Mum,
I know you won’t read this for another two decades, but I recently came across a letter you sent to a friend one week after my birth. I am the “Baby Taylor (no name yet)” you speak of, “stable but with so many things happening to such a small, little person”. When I read you and Dad were “living from day to day dreading each morning in case he is no longer there”, I felt compelled to respond – even if it breaks all the rules of logic and time. I imagine you are very tired, but no doubt continuing belligerently. Over the next few weeks things won’t get any easier, I’ll be resuscitated numerous times and put on a life support machine, unable to breathe alone.
This is what comes of impatiently arriving at 24 weeks. Doctors will even say that next time they won’t try to save me; the ultimate last chance saloon. Yet despite all the odds, you and Dad keep the faith; I climb aboard and begin to breathe independently. Thank you for believing.
I say thanks knowing this resilience will be tested again and again. Dad has told me of “Doctor Death”, the figure who steadfastly stated I would never read, write or think. I don’t blame her, people with a cerebral haemorrhage like mine aren’t supposed to buck the system. Pity she forgot there’s always an exception.
That’s something you remembered when you fought against the council to get me into mainstream education – opening the doors rather than locking them – giving me a chance. Nothing more, nothing less.
People looking from the outside never understand the impact this grit had upon me growing up. It formed my personality, I gradually internalised it, for better and for worse. At infant and primary school I was, of course, the only one in a wheelchair. I couldn’t walk. This somehow heralded the spectre of “special needs”, two words that hung around me, and a girl in my class with Downs Syndrome, like a bad smell. When my teacher refrained from asking me questions in class, ignoring my raised arm, it left me upset and determined to prove myself. You demanded I view myself the same as everybody else.
"The next time someone called me a spastic I rammed them against a wall with my electric wheelchair"
This outlook supported me as I got older. It’s funny, before hormones began to hit, adults were the most prejudicial. That changed as girls and boys felt more insecure. When I started secondary school, local kids I’d known for years e-mailed me. The message, addressed to “spack legs at the mental home”, explained I should “get some real legs” because you “wished I had never been born”. I wanted to stay strong, but broke down in tears days later, revealing all.
An apology came that afternoon. I now know you e-mailed back from my account, threatening to speak to the boys’ parents. As for me, I don't hold it against them now, and am on good terms with those involved, but the impact on me remains. “Don’t let anyone push you around”, you said. There is little chance of that - I haven't been to the gym for two years.
I must warn that it is possible you sometimes regret how I took these words. The next time someone called me a spastic I rammed them against a wall with my electric wheelchair.
School became an opportunity to rise above. Education mattered to you because you understood that people like me must excel to stand a chance. Thanks to the right support, from you, Dad, friends and others, I saw what I could achieve. I left school with A*s, finished my A-Levels and ultimately graduated from Warwick University (I’ll apologise again now for not ringing home at all during the first six weeks). These days, I'm one of the few disabled journalists in the country.
This is not to blow my own trumpet, but to prove that you are right: everyone deserves the chance of a decent education, irrespective of circumstance.
"Cerebral palsy continues to be part of my day - I will never stand or walk unaided - but the disability does not define my life"
But academia is irrelevant to what I truly wish to thank you for. You gave me the chance to live, to experience the good times when I discovered girls, parties and rock and roll – even if that meant dropping me off at some godforsaken club, or picking me up at 9am the next morning. More than that, you and Dad were by my hospital bed during the numerous operations; willing to pay for physio when the NHS gave up on me aged 15.
Today, in 2015, my life at 25 mirrors many of my generation, for both good and bad. The housing market makes things difficult, but you and Dad have been kind enough to put me, and my carers, up while I scrape together the earnings to move out. Life as a journalist is perhaps one of the most unstable professions I could have chosen, but I've never made things easy. It doesn't help that access problems a remain. This week I went for a trial shift only to find the offices to be inaccessible.
As for my love life, it remains perpetually lost between Four Weddings Hugh Grant and noughties Russell Brand. I am single for that reason.
Cerebral palsy continues to be part of my day - I will never stand or walk unaided - but the disability does not define my life. And that's because you and Dad were, and continue to be, there for me, as I am.
Your letter ends in concern over “a nasty wound” on my foot caused by me pulling one of wires out. You “hope infection won’t set in”. I didn’t develop gangrene, but it did leave a small scar on my ankle. A constant reminder of how I came to be, and who I am today.
Your proud son,
Alex Taylor