TOURETTE’S WITHOUT LOVE
Anyone who complains about Tourette’s syndrome today does so simply because they didn’t have the ‘privilege’ of living with it a few decades before the new millennium. Back before anyone even knew it was called Tourette’s syndrome.
For those born between the 1970s and 1990s, this will probably seem like a familiar story. Before that time, I think it’s pointless to talk about Tourette’s Syndrome. Although it was already being discussed at the start of the last century, it was probably ignored, marginalised or simply overlooked.
Why do we talk about Tourette’s without love?
It is no coincidence that the perception of Tourette’s Syndrome has changed over the decades. As with everything, the Tourette’s experienced in the 1980s is certainly not the one we’re used to seeing on TikTok today. Those tics and movements, which occurred in different contexts and at a different time, could be, and often were, suppressed through reprimands, scoldings and a considerable amount of physical punishment.
This doesn’t mean that your family members hated who you were: it means they didn’t understand it, they weren’t willing to understand it, it wasn’t a priority in their lives, partly due to the kind of life they led, and it wasn’t socially acceptable.
How do people’s perceptions change as time goes by?
Time, as we know, often changes our perceptions of how things appear to us. It would be simplistic and inappropriate to compare behaviour from many decades ago and judge it through the eyes of a contemporary observer. Thus, we study the Greeks for their immense culture, but we do not blacklist them or consign them to oblivion simply because they were unscrupulous slave-holders.
By this measure, Tourette’s Syndrome has evolved from being unacceptable to being seen as strange, different, worrying, distressing, and a social issue. A radical change over time, as well as in the eyes and perceptions of those who experience it or witness it.
How did those with Tourette’s grow up before the condition was recognised?
Before Tourette’s had a name, those who could managed, with enormous effort, to suppress it and hide it from public view. This allowed them to lead a normal life, hold down a job, and carry on with their existence. If that proved impossible, they could take tranquillisers. At one time, even the most modern medicines we use today did not exist.
Later, from the late 1990s onwards, people began to talk about Tourette’s. It was a reasonably good period, when people had few qualms about treating you normally, or laughing at and with you about your situations. You were accepted, albeit differently, for who you were.
In my view, the major shift began after 2010, when Tourette’s Syndrome came to the fore and people started talking about it openly; the first Facebook groups were set up, and the first official associations began to emerge. This is the moment when you are no longer ‘someone with Tourette’s’, but an individual with a problem.
What scars does an adult with Tourette’s who grew up in the 1970s and 1980s carry with them?
For someone who began living with Tourette’s in those years – and who still lives with it today – there are certainly a considerable number of scars: things left unsaid, things left undone. Family relationships destroyed by misunderstanding and a lack of acceptance.
The good fortune they’ve had in reaching the present day lies precisely in seeing how the world is changing and is striving to find a compromise between Tourette’s and the normality that every individual deserves. So, all those scars will remain in their memory, and hopefully other people won’t have to relive those experiences.
Were things better when they were worse?
This is the biggest question we can and must ask ourselves. Because whilst it is true that half a century ago there was no excuse or consideration for Tourette’s, today all too often people are victimised and excluded precisely because of Tourette’s. Because having a physical disability makes us seem like heroes who nevertheless withstand the burden of their condition; but a mental condition like Tourette’s, as a rule, makes us seem different. And here we return to the issue of perception.
We have probably, to some extent, gone beyond what was simply a dispute between awareness and acceptance, and found ourselves on the opposite side. And if we are not careful about this, we will still end up raising people with severe trauma. Perhaps it won’t be physical abuse or outbursts, but they will be ill-equipped for life because of the excessive care and protection we give them. And over time, this could turn out to be even worse.
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