6 Lessons I Learned At A Home For Mentally Disabled Adults
Hollywood has worked hard to give us a clear image of what the intellectually disabled look like -- charming, simpleminded folk with boundless empathy and compassion, like Forrest Gump, Radio, and whatever the hell Sean Penn's name was in I Am Sam. Those may all be accurate portrayals of people at the higher end of the disability spectrum, but Hollywood will never show you a realistic image of people with an IQ in the 30s, because the vast majority of viewers wouldn't want to see it.
We spoke to someone who spent years working as a manager in a community for the intellectually disabled to learn about the brutal realities of one of the country's most invisible demographics. They said ...
The Job Is Incredibly Intense
Most people's go-to image for intellectual disability is Forrest Gump. The problem is, Forrest Gump didn't have an IQ of 32, or find himself confined to a wheelchair because he hadn't fully developed physically, unlike many of our clients. We want to have this picture of the disabled as inspirational folks overcoming their challenges to prove they're just like us! But when you start piling one disability on top of another, things aren't that simple. There isn't always going to be that moment where everything works out and we all high-five each other over the closing credits.
A person who struggles to move on their own has bigger fish to fry than sitting around
handing out chocolate-themed folk wisdom.
I like to think that I'm a caring, empathetic person, because you have to be to do this job. But there's nothing inspiring about cleaning up after a blind man who does nothing but moan and soil himself all day. There's nothing inspiring about stopping a man from beating himself because that's how he deals with whatever's going on in his head.
My skills lay in management, but I almost got whiplash dealing with the problems that would pop up over the course of an hour, let alone over a week. I'd have one client running to steal from the refrigerator, while a second is making a trail of feces to the bathroom, a third is attacking the television because he doesn't like the news ticker, and the fourth has fallen out of his wheelchair in a failed attempt to masturbate. You are dealing with the absolute base needs of humanity, and it will drain you.
Yo, Hollywood, if you're looking for Oscar-bait ideas, start here.
Severe mental handicaps often come with physical ailments, because at times human biology can be a cascading disaster of malfunctioning parts, like that 1995 Geo Metro you bought off Craigslist. Consequently, the medical needs of a single client can be mind-blowing. Many clients were visually impaired. One was blind, deaf, and severely mentally disabled -- to him, every second of every day was a terrifying riddle with no solution. There's a reason the play about Helen Keller is called The Miracle Worker, and that's because teaching someone who can't see or hear how to communicate is a goddamned miracle. Add in a serious mental disability, and you have a person living a literal nightmare.
And yet, this all used to be much, much worse. For you see ...
Our Treatment Of The Disabled Used To Be An Atrocity
The facility I worked at was founded in the early 20th century (when it was a farm colony), and if ghosts are real, they haunt the shit out of the place. Back then, babies were dropped off at a train station with no identification, the same way you get rid of a Dickensian orphan. And this was considered progressive, considering it was the height of the eugenics movement. If you were struggling to get by and had a profoundly disabled baby, what else were you going to do?
One older staff member told me that as recently as the 1970s, clients were fed slop-mounds of gruel for every meal. Bath time involved being hosed down like an animal at the zoo and getting beaten if they defecated themselves. And back then, the staff thought that's what compassion looked like.
At least it was illegal to intentionally starve developmentally disabled children ... by fucking 1984.
Things are much better today. Today, the biggest enemy is just apathy -- the common person just doesn't want to think about this subject, and certainly doesn't want to fork over money to the cause. That's a problem, considering that at our facility, it takes 1,200 paid employees to care for the 300 clients. The clients obviously can't pay for themselves, so this is one of those cases where the free market doesn't offer a solution. ("You mean there's not fierce competition for the care of profoundly disabled people who can't pay you back?")
So the residential homes here are in good condition (the residents are spread across dozens of separate buildings), but everything else is ancient and falling apart. More than one building was closed because it was still full of asbestos, and we didn't have the money to get it removed. Meanwhile, the plumbing predates World War II and is on the brink of turning the entire community into Crocodile Mile. I had to get approval to replace a single chair, because the cost would've put us over budget.
Pictured: one of the many financial excesses of "Big Disability."
All of this is because to the average citizen (or taxpayer), this population is just invisible. You've passed by them in grocery stores and immediately forgotten about them (I know I did -- I lived in this city for almost a decade before I started working at the community, and I never noticed the clients in public before that). People simply don't register their existence.
Unfortunately, this often extends to their own families. Of the 22 clients I was responsible for, only one had a family member regularly check on him. When another client passed away, I had to help organize the funeral. His family finally showed up, and I had to be supportive even though I was furious that they never once bothered to visit him. No birthdays, no Thanksgiving dinners, not even a phone call on Christmas. I put on a nice face, shook the hand of the brother who lived an hour away, and expressed my condolences. Later, I contacted them to find out what they wanted to do with his belongings. They never responded. As far as I know, they're still in storage -- this person's last worldly possessions are just sitting in a dusty box in a dark room, forgotten, just like he was.
Sex Is A Complicated Grey Area
There's a surprising gray area that comes into play when you talk about intellectually disabled people and sex. Technically, the clients have the same right to enjoy sex as any other red-blooded American adult. However, they're not considered capable of giving consent. If someone with an IQ of 70 has sex with someone with an IQ of 40, are they taking advantage of them? If not, then where do you draw the line?
If your answer was an exasperated shrug, congratulations: You now know as much as any expert on this topic.
We don't know the answer, which is why we use the long-standing and universally respected technique called "Hope like hell the situation doesn't come up." If it does, we're required to call our abuse hotline and report it so that an investigation can be launched. It may sound excessive to police our clients' sex lives, but if there's even a hint of abuse, we have to put a stop to it. And this is a situation where any sexual contact can be considered abuse.
Consequently, masturbation is popular, which is another touchy subject (is it worse if I say the pun was or wasn't intended?). We obviously can't stop our clients from flicking it in the privacy of their own rooms, but our clients aren't the most bashful people on the planet, and would sometimes do their thing in front of other residents. If it was bothering other clients, we could take them to their rooms to let them finish up. However, if we were the only ones bothered but the other clients were cool with it, we just had to politely look away. It's kind of like living with your freshman roommate all over again.
"You can stop leaving that 'Healthy Skin TIps' article by the Jergens, dude. It's not fooling anyone."
And then there's something that has to be monitored even more closely ...
People Constantly Try To Steal From The Disabled
What do you think is the biggest risk of abuse the intellectually disabled face? Physical? Sexual? I'll give you a hint -- it starts with an "f" and it's not a synonym for one I already named.
Financial abuse is something we associate with grandmas who want to help nice Nigerian men reclaim their Principates, but the intellectually disabled have trust accounts, too. They draw money from social security, and some earn wages from on-site jobs. It's the responsibility of a team of staff members to maintain these accounts, and that's a tall order because people are trying to skim off them constantly. Specifically, the very people charged with helping them.
We have had staff use a client's money to buy clothes for themselves. Others would eat a client's dinner and then let the client pick at the leftovers. Maybe the employee just really wants to go to an event but doesn't want to pay for the tickets -- well, just insist it's the client who wants to go, and you're just helpfully accompanying him.
"Yup, her idea. Old lady Abrams is way into thrash metal."
To stop this, we have to set up a convoluted system that basically demands every penny be accounted for at every step. For example, let's say a therapist wanted to request funds for a client to eat at Applebee's (believe it or not, taking someone to Applebee's is still legal in many states). As the home manager, it was my job to approve the request. Then the social worker and my direct supervisor would sign. From there it would go to accounting, and a secretary would pick it up the next day. Then I would go pick it up from her office and access our safe. We had five days to produce either receipts and change, or a damn good excuse for why he hadn't. Signatures were required every step of the way, and all just for some mozzarella sticks and subpar quesadillas.
"Artichoke dip? Hang on; let me grab a box of pens."
One staff member took a client to Burger King, where he ordered a burger that had a buy one, get one free deal, because showering customers with free food is the only way to convince people to eat there. The staff member ate the free one, and was fired. The employee had a clean record, and didn't think he had done anything wrong by eating the free extra, but administration wanted to set an example -- you don't mess with the clients' money, period.
And you need these constant reminders, because ...
The Staff Are A Mix Of Incompetent And Inspirational
I use the word incompetent, but I mean it in the best way possible. Remember our budget situation -- most of them were hired straight out of high school, so unless the job they're applying for involves fast food or researching new forms of Internet porn, they tend to lack experience. Even then, you're not going to find a lot of young adults who can pass a rigorous background check, have a clean driving record, and are willing to do some of the hardest and nastiest work you can imagine in exchange for the princely sum of $8 an hour. Coming home reeking of Big Macs and french fry grease starts to sound awfully good in comparison.
"At least when someone starts masturbating at me, I can tell them to leave."
But here's the important thing -- the people we did hire, who were barely old enough to be called adults, and who couldn't get into college or find a better job, actually cared. For that funeral I mentioned earlier, we held a small wake with the other clients. Each member of the staff cooked something. Sure, most of them were still mastering the subtle nuances of ramen noodles and Kraft macaroni and cheese, but they worked hard to do something nice for the clients. I'm not an overly emotional guy, but that was like watching the opening minutes of Up all over again.
Hang on, I've got something in my eye -- specifically, a shit load of tears.
The work is exhausting, and what little money you get paid can be easily earned elsewhere, so to see kids actually doing the work and giving a shit about the clients is pretty special. I was an idiot when I was 19. Most of you were, too. But these were the hardest working and most compassionate idiots I have ever met.
There's a sweet, hilarious cognitive dissonance to it all. A staff member would help a 55-year-old man wash his hands, then brag to a co-worker about how drunk they got at the club the night before. They would frequently get high at work, and I prevented enough on-the-job sex that I've probably noticeably affected the town's population growth. But they did a job that many older people would be completely unable to handle. And I'm proud of them for that. So here's where I point out that ...
It's Not All Bad
I said at the beginning that this piece of land used to be a farm, and a small corner of it still is. Some of the higher-functioning residents tend it; they get fresh food for their meals, and staff will purchase some produce, with the income going towards resident activities. We also have a woodworking shop. We go through a lot of furniture -- you have no idea how badly a couch can get ruined until fully grown men constantly throw themselves onto one. The shop makes futon frames, tables, and chairs, and they do great work.
And to those who question how impressive that is, remember the time you tried to assemble any of those from Ikea.
Part of our job is to teach life skills, and there's something awesome about watching a client pick one up. It may take years, and it may be something as simple as writing his own name, but comparing the client's worksheets from when he started to when he finished is amazing.
The clients will also hold plays and talent shows from time to time, but best of all is Christmas. Local churches will sponsor homes like ours months in advance, and contact us early on to learn our clients' interests, clothing sizes, and so on, so that by the time the 25th rolls around, there are stacks of presents under the tree. We put up decorations that our staff and clients made together, and we'll do what we can to cook a nice Christmas dinner. And I almost ruined the whole damn thing once.
I was a new hire, and I worked the evening shift on Christmas. When I came in, I asked one of the clients how his Christmas was going. He began excitedly showing me his presents, explaining that these were all the gifts Santa had brought him. Because I was new (a term here meaning "dumb"), I almost blurted out, "What do you mean, Santa?"
Right as I opened my mouth, what should have been obvious finally clicked in my head, and I managed to bumble out "Oh, right! Santa came!" instead. This man had held an unwavering belief in Santa for over 50 years, and generations of staff members had helped him keep it intact. And one dopey dumbass almost lumbered in and ruined it for him. If the fact that I just narrowly managed to avoid destroying this client's holiday isn't a Christmas miracle, I don't know what is.
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