Generally speaking I guess I’m quite lucky. Certainly when it comes to what liberal commentators often like to call “privilege” – although really that always sounds to me like far too sneering and derogatory a term for what are essentially accidents of birth. It’s what you do that counts, not the way you are. Anyway, that is a whole other argument. Whatever you call it, as a white, heterosexual male in a first-world country I tick most of the boxes as someone who wouldn’t normally be expected to experience discrimination. In fact, it’s only my working-class roots that prevent me having a full set. Even my autism diagnosis five years ago has not resulted in me experiencing what you could call discrimination. So, I’ve always considered myself pretty fortunate – not smug or complacent – to have been born who and where I was. Until a few days ago.
You may have read over the weekend news reports about the UK’s Driver and Vehicle Licensing Agency (DVLA) updating its criteria on medical conditions that anyone holding a driving licence has to notify the authorities about. Under their new rules anyone with an autism diagnosis would now have to notify the DVLA of this, for them to assess whether you are able to retain your licence. The first thing to say is that this change was not publicised to anyone – not to the medical professions, not to autism organisations and charities who support those on the spectrum, not to autistic people themselves in any way and, incidentally, not to driving instructors either – a relative of mine is an instructor specialising in pupils with special needs and received no notification of the updated requirements. Before continuing, it’s important to point out that I have no issue at all with the DVLA having a list of notifiable conditions, nor do I have a problem personally complying with the relevant obligations, having done so several years ago when diagnosed with glaucoma. That involved taking a special test to assess my peripheral vision. Nor was it the case that I never thought to check the situation regarding autism – after diagnosis I checked the DVLA website and was on there again within the past 12 months so I could point somebody asking about this issue on a forum to the relevant details. On all occasions, the requirement was that you had to notify the DVLA of your autism if it could affect your driving. Common sense, and in line with their other rules regarding visual defects and other conditions. Of course, a medical condition should only prevent you holding a driving licence if it actually impacts your ability to drive safely, right? Of course, the question of how to tell whether it impacts your driving is left open but – and this is apparently the way most driving instructors interpret the guidelines – I always worked on the basis that as I’d held a full licence for almost 20 years before being diagnosed, I managed to pass my test and have been on the roads without any problems for that period of time and therefore could conclude that the condition did not impact my driving.
But then came reports of the recent change. First as rumours on social media, then as confirmation in releases from bodies like the National Autistic Society and, eventually, from the DVLA itself. The DVLA claimed it was issuing clarification and the wording should always have been that autism is a notifiable condition. As one might expect, the announcement quickly prompted a huge amount of debate and caused huge stress and worry up and down the country for autistic people. A visit to the DVLA website to download the relevant form revealed a typical standard bureaucratic document with little relevance to autism. How would we accurately portray our condition and how it affects us with only this form? Would the presumption be that your driving is affected unless demonstrated otherwise or the other way around? Would we suddenly be subject to the threatened £1000 fines for not notifying (yet)? Against this backdrop, over the weekend the NAS, backed by prominent autism campaigners, media commentators and several members of parliament, raised a petition and called for further consultation with the DVLA. As discussions moved on from the sudden and arbitrary nature of the change, with no proper justification behind it, a key issue became the legality of the move. Essentially, the general consensus was that requiring people with a certain condition (not a disease or illness, but a lifelong condition) to register with a government department who would then make arbitrary decisions about them based on who knows what criteria was in violation of applicable anti-discrimination legislation.
And just like that, all my – albeit largely unconsidered and taken very much for granted – “privilege” was blown away. Suddenly, I was feeling persecuted, discriminated against for something that was part of who I am. Lumped in with other people as a homogeneous group under a certain label, and potentially exposed to negative decisions and policies for no reason other than being part of that group. It was a totally new and very unpleasant emotion to experience. What would be next? Would I need to register my autism to receive health care, access public services? Would there come a day when I have to carry a card? How about walk round with an “A” on an armband? An extreme example of course, but for the first time I understood the confusion and fear that suffering discrimination can cause. And the anger. Because I was mad. I was raging, wanted to do something about it, shout and yell at those responsible, well at anyone and everyone really. And also there was powerlessness. What could I – or individuals like me – do against a powerful government organisation?
On the latter point, the answer turned out to be quite a lot. The hastily thrown together coalition of politicians, media, lawyers, the NAS and individuals signing petitions and firing off e-mails in protest brought about a very fast change of heart (or perhaps mind would be better as heart suggests some kind of human empathy or consideration) on the part of the DVLA. They issued “clarification for muddying the waters” and confirmed the original wording would stand. No apology for stress and confusion caused of course, but you can’t have everything. The key outcome is that I and other autistic people in the UK can continue to drive and do not have to register our condition.
The main reason I’m writing this is as my way of thanking the NAS, autism campaigner and excellent writer Laura James, and everyone involved for their prompt and decisive action on our behalf. It was a great demonstration that the autism community in the UK really does take care of its own when needed and that is a very reassuring feeling indeed.
But there’s another reason too. What this relatively minor incident has done is teach me an awful lot about discrimination. I felt anger, confusion and fear for a couple of days. Some people have to face it day after day, perhaps for their whole lives. I’ve never downplayed the existence of discrimination in the world and I’ve always tried to speak out against it wherever I can, so this isn’t a road to Damascus kind of thing. However, it has given me a little taste of what some people have to go through because they are perceived as different. It has made me more determined than ever not to accept or turn a blind eye to situations where someone is belittled, persecuted or punished for just being who they are. And it’s made me keener than ever to do what I can – in terms of raising awareness, sharing my experiences or promoting autism-friendly healthcare, educational, social and working environments – to contribute to a better understanding of people on the spectrum in society and especially among those with power over our lives.