I know I say it every year, but Rare Disease Day falls on 28th February, then International Wheelchair Day on 1st March - I don’t think that, as a wheelchair user with a ‘rare disease’, it is unreasonable to expect presents and cards.
I can wait.
I suppose that the ‘world reopening’ should be present enough. Like many people, I’m excited to be able to see my family and friends properly, see faces not wearing masks, get back to restaurants and pubs and travelling.
But as a wheelchair user, this all comes with a sense of trepidation. Whilst I’ve missed my weekly trips to and from London and elsewhere in the UK, I’ve also had a chance to reflect on how frankly traumatic some of those trips were due to multiple assistance failures. I look back with some degree of disbelief that time and again, I was left on trains, late for meetings, and harassed by staff for just going about my daily life, and yet I kept going, kept travelling, kept working, kept campaigning to make things better.
But I’m one of the lucky ones. I have an amazing chair, which enables me to roll on and off trains with ease (when the ramp is there), carrying bags of luggage between my feet, and getting me through long days rolling around London. I’m used to having to self-advocate, and am able to, loudly, if needed. If something does go drastically wrong, you know I’m going to be calling a friendly journalist to make sure people know the challenges disabled people face on a daily basis. But this doesn’t make up for the frustration and exhaustion caused by battling against a system designed as if people like me don’t exist.
So yes, I’m looking forward to the ‘new world’ opening up to us from the end of June (hopefully!). I’m excited to see friends and family again. But I’m also hoping beyond hope that this world truly is ‘new’, truly is accessible, and that maybe, the trauma of previous travel will remain unpleasant memories.