Permanent Vacation is a post everyone should read. It’s important. And it’s true. And since the chances of you getting through life without encountering at least one person who needs a little extra help are slim to none, you should read it, think about it, and let it guide your future thoughts and actions.
The issues around disability have been a regular part of my life for a long time. I’ve lived with disabled people, and I’ve worked with them.
Back in the day before I fell down the stairs in 2004 and my life almost completely fell apart, my day job was ensuring that large-scale websites were accessible for disabled folks and others with accessibility needs. Accessibility isn’t just about helping the blind use a website, or offering text-based alternatives to audio for hard-of-hearing or deaf folks. It’s also about making a website usable for folks who can’t use a mouse (too much mouse use can do that to you – trust me), or for folks who needed text to be larger than the 20-something-chosen miniscule stylized fonts that folks born after 1980 seem to be particularly fond of. It covers everything from how you navigate a website to how you use the information. There’s a lot to cover, and a lot of software engineers don’t want to bother with it.
I’m not sure why – it’s just basic human decency that drives the accessibility train.
At the time I was making websites more accessible, I had no idea that one day I would have my own disability to deal with — a twice-hidden disability, no less, which is as adept at hiding itself from me, as it is at hiding itself from others. Granted, one of the things that obscures TBI as a disability is the fundamental human aversion to brain problems. We don’t want to know about it, don’t want to think about it, don’t want to explore it, and we certainly don’t want to have to live our lives around a traumatic brain injury, concussion, whiplash, or whatever else you care to call the damage to what’s between your ears.
There’s a weirdly Darwinian streak we all seem to have within ourselves, when it comes to surviving head trauma. Either we heal, or we don’t. Either we’re okay, or we’re not. No middle ground. No gray areas. No good days or bad days. Just OK or NOT OK. And if you can’t make a go of living your life after you’re diagnosed and have treatment… or after having a few days/weeks/months off to get back on your feet… and if you can’t go back to functioning as normally afterwards as you did before, then you deserve to be shunted to the back of the room/bus/line, as someone who is “just not trying hard enough.”
Well, there’s head-injured, and then there’s stupid. These kinds of attitudes towards head-injured people are just plain stupid. And they do more to hinder the long-term well-being of TBI survivors, than any amount of brain trauma.
I could get incredibly riled over this — and believe me, I have in the past — but I’ve got a full day ahead of me, doing things I love to do, so I’m not going down that road. I will say, however, that if people could just get some basic facts about head injury and its effects… if people in general could just realize that an injury to the brain is indeed an injury and it never stops affecting the person who was hurt… if people could just step back and take a little bit more time and stop being so haughty and egotistical in their attitudes toward disabled and otherwise challenged folks, the world would literally be a better place.
See, here’s the thing… A serious, enduring injury (like TBI) is not the sort of thing you can heal all on your own. It’s not like a broken leg. You can’t put a cast on it that people can see and sign — and help you with, when you’re approaching revolving doors. The brain (especially) has a way all its own, and it’s a mystery to even the most accomplished experts, how it heals — and why. And while the brain may restore itself to some extent, the full-spectrum impact of a TBI is not the sort of thing that can be healed only by the physical knitting together of the severed connections — which can actually never be restored to their pre-injury state… Once the damage is done, it’s done (from what the experts say).
The full-spectrum impact of a TBI can touch every aspect of your life, from your sleep/wake cycles, to your tolerance of heat and cold, to your ability to understand what people are saying to you, to your tolerance for frustration. It can make you jumpy and irritable and verbally abusive, and it can cause you to say and do things you would never want to do, by reducing your brain’s ability to inhibit unwanted words and action.
And what’s more, the changes don’t just affect the injured party — they affect everyone that person comes in contact with, either directly or indirectly. Even if you manage to present as perfectly normal, even if you manage to keep your act together on the surface, if you’ve got TBI related issues like increased distractability, lower thresholds for anger, and sleep disruptions, the cascade of behavioral and logistical effects can create subtle cracks in the foundation of your everyday life, which ultimately compromise your ability to get on with your life in a mature and responsible fashion, even your physical and mental health.
Here’s how you can get into trouble, thanks to a TBI:
- TBIs have a nasty way of slowing down your thought processing speed.
- Sleep disruptions have a nasty way of resulting in increased agitation and distractabilty.
- Increased distractability can lead to “careless mistakes”.
- These can lead to arguments with others.
- Arguments can escalate if your flashpoint threshold is low.
- A low anger flashpoint threshold can become even more explosive if you’re tired and not thinking well.
Now, if the people you’re dealing with have no idea that you’re having trouble sleeping, and you take a little while longer to process what’s happening, and they don’t have a clue how quickly your temper escalates (through no intention of your own, by the way), that just compounds the problems. Everything is complicated by impatient people who are in a hurry to get stuff done, without being mindful of the one they’re dealing with. Nothing is easy, when someone does stupid stuff to provoke you, or doesn’t cut you any slack. A hidden disability has a nasty way of getting worse, when you have to deal with someone who has no compassion and no patience for others who are just operating at a different speed than them… and who say and do unkind and hurtful things, just because they can.
Truly, it doesn’t have to take much to help someone with a disability like TBI get through the day. All it takes is some understanding and humility and respect. If you know full well that everybody has issues, that everybody has an impairment of some kind (large or small), and you understand that people-helping-people is a great way to not only get the job done, but also humanize your interactions, then the abilities of both parties are enhanced, countless issues can be avoided on the spot.
The injured person standing at the counter gets an extra few minutes to figure out what they want to do, and the person waiting on them gets an extra few minutes to catch their breath in the midst of a busy day. It’s not a bad thing.
But if the people you’re dealing with don’t have patience and compassion and aren’t willing to cut you a break, they create havoc for both you and them. The lack of simple, fundamental human decency, and a close-minded judgment of those who are different in some way, does far more damage in the long run, than the actual injury itself. Treating the disabled like they’re sub-human registers with us on a deep and fundamental level that wreaks havoc with our concentration, our focus, our available energy stores. Instead of solving a problem, like ordering from a menu or discussing a customer service issue, we’re plunged into a life-and-death battle for our basic human dignity. When people who are supposed to serve us refuse to treat us with respect, we walking wounded have to shift our attention away from the real problem we’re trying to solve, and shift over to the debasing challenge of convincing the person who’s supposed to help us solve the problem that we deserve to have the problem solved.
Which is a total friggin’ drain — one that should never have to happen.
Look… everyone has issues. Can we agree on that? Everyone has some problem of some kind. There’s no escaping that fact. Some of us have more obvious or more comprehensive injuries than others. But it’s really how we deal with our problems, and how we treat others who have different kinds of problems, that determines the debilitating effects of the injury.
If someone with a TBI has more problems when they’re rushed and pressured, then others can help them out by not putting all sorts of pressure on them, and not rushing them to do and say things they need to think through, first.
If someone with a TBI has more problems when they don’t get enough sleep, then their friends and family can help them by not demanding that they stay up late to watch a movie or television with them.
If someone with a TBI has hard of hearing, then others can help them by talking directly to them, not covering their mouths, and not making additional background noise while they’re talking.
But if everyone who thinks they’re okay is locked into the idea that if you don’t behave in such-and-such a way… or you don’t think or talk at such-and-such a speed… there’s something wrong with YOU, then the small problems become much larger. And the after-effects of injuries become even more debilitating.
Ultimately, I believe there is a solution to almost every problem out there. And with the right information and the right mindset… the right education and intention, issues that are sticky can be unstuck, and disability can be diminished. But if people who are supposed to help, flatly refuse to do so, then they themselves are helping to create and perpetuate true disability.
It’s not the injury that’s ultimately the problem. It’s ignorance and smallmindedness.