What Disability Advocates Can Learn from House Elves

Hello, readers,

So, the first question on your mind must be, where have I been? I’m here, but I ran out of ideas for awhile. And frankly, I didn’t feel much like writing. Disability rights and the issues pertaining to them are all around me, but sometimes I just can’t confront them. I can’t deal with the mixture of frustration, anger, fear, hope, confidence, and the vague feeling that I’m crazy for continuing to talk about this when very few others seem to care. I can’t deal with the idea that the majority of people don’t even think about disability rights unless they’ve been personally affected. I can’t keep going on alone. Sometimes I need a good, long sabbatical.

Well, I had one and now I’m back, with a radical and thorny question. This question formed in my mind a while ago, but didn’t return to the surface until a few days ago.

I’m still reading the Harry Potter series for the first time; I’m now up to Goblet of Fire. If you’re a Potterhead, you might know Goblet is the book in which Hermione becomes aware of how House Elves live their lives. She’s absolutely disgusted at what she witnesses and considers House Elves’ work slave labor.

By modern American standards–most modern world standards, I’d hazard to guess–Hermione is right. House Elves are, no other way to say it, treated like crap. They aren’t paid for their work or given any other benefits (sick leave, healthcare, vacations, you name it). Their masters and mistresses own them, and can force the elves to do their bidding even if said bidding frightens the elves (see the case of Winky). Elves can be forced to do things that are ethically and morally wrong. They can be blamed for anything and everything, and when they are “bad,” they must severely punish themselves (see Dobby as an example). House Elves go around wearing things like pillowcases and tea towels because they aren’t even afforded clothing. It’s no wonder Hermione dedicates herself to the Society for the Promotion of Elfish Welfare (SPEW). I’ve gotta say, maybe it’s the American Muggle in me, but I admire her for her stand.

There’s only one problem with Hermione’s new crusade. According to Ron, the other students at Hogwarts, and almost any other wizard she talks to, it’s a lost cause. House Elves apparently like being enslaved. If anything, they fear freedom because they can’t function in it; those who try end up putting themselves in potentially mortal danger. A good House Elf would never dream of any other life; as Winky explains to Harry and friends, the life of a House Elf is supposed to be pretty miserable. According to Winky, Dobby, and most of the rest of the Wizarding World, a House Elf is happy being treated like crap.

Now, before we go any further, I want to clarify something. My intention is not to compare real, non-magical persons with disabilities to enslaved House Elves. Considering the way House Elves dress, speak, and conduct themselves in general, that would probably be insulting. But I am comparing the lives of persons with disabilities to the situations of House Elves. In other words: the temporarily able-bodied world, in one way or another, often treats PWDs like crap. TAB people expect persons with disabilities to live and behave like second-class citizens and justify this attitude with statements like, “Well, what do you expect us to do, just throw them out in the world and say, ‘Go live independently?’ They’d never make it!” The TAB world has convinced itself that PWDs are happy being treated as they are. They are happy in stagnant situations that may never change, such as living below poverty level, waiting for years on end for help and services, etc.

And are they? If I’m going to be a responsible advocate, I have to ask: have I been wrong all this time? Am I as misguided as Harry, Ron, and Co. think Hermione is? Do I see problems that aren’t there?

Sometimes I think so. There are several people with severe cognitive disabilities who go to my church, and I know most by name. Since I myself don’t get out much, I rarely see these individuals outside church. But when they’re there, I see they are happy. They not only worship–they jump around and rock and dance like I think we all wish we could but wouldn’t dare to because it looks “weird.” They praise God for the tiniest things. They shout out in church right over the pastor and nobody cares. They say things that are inappropriate to the moment–but they don’t know that. Or if do, they don’t give a rip what you think! These people–T, L, J, A, and so many like them–they know what it means to worship and embrace Christ with abandon. They have the simplest and most enthusiastic belief I have ever seen.

It’s easy for me to look at these brothers and sisters in Christ and think, “Why am I fighting so hard for things to be different? They seem happy. I’d be bored to tears doing the jobs they can probably do–but they love those jobs. They’re used to living with caregivers, parents, whoever, and might even like it. They love the people who take care of them and consider them true friends. So why am I poking my nose into disability advocacy at all? Am I just SPEW-ing bitterness because my life isn’t how I want it to be?”

It doesn’t even have to be that personal. I’ve read articles about young people my age who do the most menial jobs for little to no pay, or who live in institutions, and their families always say the same things. “He/she is so happy.” “He/she is proud to do this.” “I’m so happy he/she has a place in the community.”

Guys, it makes me feel like a witch (G-rated version of how I really feel, so fill it in). It makes me feel like I am personally trying to diminish other people’s happiness. I question, am I bringing lumos to the situations of people with disabilities, or am I just vomiting up slugs? I’ve asked myself and others: What’s wrong with me? Why can’t I be like Lucy, or Travis, or Johnny? Why can’t I be happy packing boxes or sweeping floors? Why can’t I willingly, contentedly move into a group home? Why does the thought of living with my parents or family members forever, make me anything but joyful? WHY?

Thankfully, my heart found an answer. I want to clarify that it’s my answer, not yours. Your answer, and the one for your loved one, is probably a little different. But here it is.

-I cannot be happy living the life of another PWD because I am not that person and that’s not my life. Just because I want more than a menial job and a life with a caregiver doesn’t make me a snob. It makes me aware of my physical and mental capabilities in addition to limitations. Every PWD was created for a different life, and they have the right to be happy in the life that works for them. You can’t expect everyone to go to Harvard or win the Paralympics, but nor can you expect everyone to pack boxes.

-Yes, some PWDs are already happy with what they have in terms of jobs, living arrangements, leisure time, etc. And if they are happy, no one has the right to tell them they’re not. Unless the PWD is in imminent danger, or not living up to his or her full potential, we don’t need SPEW-like changes. We don’t need to get our panties in a wad.

-Despite this, other PWDs do want more. They recognize their rights are constantly and consistently ignored or violated. They recognize the world is not built for them. For those people, even and especially the ones who can’t say the words, we as advocates must keep working.

-Some PWDs are happy in what a typical person would consider a less than ideal situation. Others are not. But happiness is not the main issue here. The main issue is, are we letting PWDs create and live the lives that work for them? There is no excuse for bigotry and prejudice toward PWDs. There is no excuse for treating them like slaves and assuming they can’t function unless they are completely controlled. And God help you if you use, “But he/she is happy like this” as a justification. I’m coming to believe that a person who thinks temporal happiness is the be all, end all, actually has a sad view of the world.

People with disabilities are people, not house elves. So yes, be careful what you say; don’t “spew” things or try to micromanage somebody else’s life. Assume absolutely nothing–except competence, personhood, and the need for happiness. That’s much better than giving a PWD a metaphorical sock. When you assume competence and personhood, you give PWDs the avenues to real and lasting happiness.

 

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“I Prefer Not to Answer” is an Answer

Readers, we need to talk.

If you’ve been following the Nest for any length of time, you probably know or can guess a bit about my political convictions. I’m pretty conservative, more fiscally than socially, but still conservative. I think the Supreme Court dropped the ball in 1962 when prayer was removed from school. I’m pro-life (and anti-death penalty, which most conservatives I know don’t really get, but whatever). I love and respect the LGBT community but do not support things like kindergartners being taught about sexual identity/preferences, teens getting sex changes, etc. I would rather have immigrants come to my country legally and pay their dues as best they can, than come illegally. I still say Merry Christmas, wear some form of flag memorabilia on July fourth, and get a kick out of Todd Starnes’ new radio show.

I also think some of the ways we’ve bent over backwards to avoid offending anyone for any reason are ridiculous. I’m talking about schools that refuse to let students use traditional gender pronouns. I’m talking about the college students in MS who were “triggered” by cornbread served at a banquet. (Side note: Yes, there are real traumas and real triggers. But personally–if you are in college, if you are old enough not to have to get a tardy slip when you’re late for class because you couldn’t find a parking space for your car–then you are old enough to recognize cornbread and cotton tablecloths aren’t legit triggers in 99.9% of cases). Whenever I hear yet another report of microaggressions, or some group claiming they were discriminated against just because they didn’t get their way, I cringe. And that goes for your WASPs, too, by the way. I respect that you guys want the Ten Commandments to stay in front of your courthouses. I respect that you want your children to be able to recognize the Confederate flag as a heritage symbol. But don’t whine and cry to me because somebody didn’t specifically pray in Jesus’ name at the football game, or because the school instituted Meatless Mondays. That’s ridiculous.

Feeling how I feel about these kinds of things, I get a little squirmy when something bothers me about the way people with disabilities are approached. My personal policy has always been, if it’s not blatant discrimination, it’s not worth throwing a fit over. I don’t want to become the person who claims microaggressions every time somebody asks her about her cerebral palsy, or insinuates she can’t do something because of it, or whatever. Heck, half the time I’m not even sure what a microaggression is because the definition seems to change every day. That’s why I hesitated to say what I’m going to now:

Subtle discrimination and microaggressions against people with disabilities do exist.

Are they always intentional or mean-spirited? No. Do we need to claim we’re “triggered” every time we see or experience them? No. But they are there. And even things that don’t necessarily fall into those categories, are just plain strange.

Personal example from yesterday: I’ve been unemployed for a few months, having quit my previous job after dealing too long with an unreasonable client. So yesterday, I got a lead and applied for a new position. At the end of the application, there was the usual section on personal demographics. You know, the one that has fields like, “Sex,” “Race,” etc. The one where you specify if you’re a U.S. veteran or are registered for the Selective Service. At the very end of that section, there is the question, “Do you have a disability?” Your only two options are yes or no.

You know where I’m going with this, right?

Right. Our job applications, forms, what have you, have evolved. On most forms, when asked about your gender, race, or color, you can say “I prefer not to answer.” Unless an organization requires you to sign a faith-based statement, you can mark “I prefer not to answer/no answer” if asked about religion. But somehow, it’s okay that PWDs have no choice but to disclose their disabilities on a job application? I don’t think so!

Now again, I’m not sure I consider this a microaggression. I’m not sure I consider it discrimination. But at the very least, it’s singling out one group, in a way that others are not singled out. It *could* be used for negative or discriminatory purposes. But even if none of those things were true–why? Why, once again, does everybody get a choice except PWDs? Why, once again, are PWDs the only ones required to disclose some of their most personal information, when other minorities can say, “I don’t want to answer?”

It makes no sense to me. Conservative, liberal, Christian, Hindu, I don’t care who you are–it’s just weird. See, when employers tell people with disabilities to mark yes or no, they put them in a bad position. Either the person effectively lies, marks “no,” and then has to reveal the truth later, which damages his or her credibility. Or, he or she marks “yes” and goes into the job interview, the meeting, whatever, already behind the eight ball. Because let’s face it, people. Microaggressions and triggers or not, PWDs get judged, and often more harshly than most other people. What’s worse is that employers claim they don’t do it, but we all know they do. We all know that when they hear something like, “I have cerebral palsy” or “I have Down Syndrome,” a little light bulb goes off in their heads. People with disabilities have come a long way, but we’re still getting the leery eye, directly or indirectly, when we try to function in the mainstream world.

Now, I’m not saying every employer goes straight to that disability box and throws out any applications marked “yes.” That’s not a micro-anything. That’s MACRO discrimination for which people should be held accountable. But personally, I think that little box does make real discrimination easier. If not that, it makes it easier for an employer to rationalize, “Well, this person is qualified and seems great, but this other person is just as qualified and doesn’t have a disability, sooooo….” And you see what happens.

That disability box should not be on our applications and forms, period. It sets PWDs and their employers or supervisors up for too much fallout. Plus, it fails a basic litmus test. In other words, you would never write on an application, “Are you Muslim? Check yes or no. Are you black? Yes or no–and with what skin tone would you identify yourself? Do you have any affiliation with the LGBT community, yes or no?”

In fact, if that did happen, everybody from both sides of the aisle would be screaming their heads off. So again, why is it okay to do it to PWDs? Take me out of your box–and take “I prefer not to answer” as an answer. Thank you.

 

Blog Post/Quickie: Flip the Script!

Hello readers,

First off, before we get into the post, prayers and good thoughts are going up for everyone in areas affected by Hurricanes Harvey and Irma. Prayers also going up for our friends and readers in London who experienced a terrorist attack via bucket bomb today.

I posted this a couple days ago, and guess what happened? WordPress ate it. Thank you, technology. So, this is kind of a post/quickie, because it’s been so long.

One quirky thing about me–among many–is that I don’t follow trends. I usually get involved with or hooked on something long after it’s been trendy. Maybe I’m a Luddite at heart, or maybe I just think that something so hyped up can’t possibly be good. I don’t know. I didn’t invest in an MP3 player or iPod until graduate school, because what the heck is wrong with CDs? I finally broke down and got a Kindle last Christmas. I didn’t start watching Once Upon a Time until a couple years ago, and I finished the first Harry Potter book Monday night.

So you might not be surprised to know, I recently started watching The Middle. I love it, especially Brick, played by Atticus Shaffer. Little bookworm extraordinaire that he is, we have something vital in common. He also displays undiagnosed characteristics of Asperger’s, and his actor actually has a disability in real life (I’m pretty sure it’s Brittle Bone Disease, or osteogenesis imperfecta. If anyone knows for certain, feel free to let me know). I’d tune in just for Brick, honestly).

Well, because of his “quirkiness,” Brick is required to go to a social skills class (not getting into the fallacies of that). In one episode, the teacher of said social skills class invites the parents to see what their kiddos have been learning, in a sort of “recital.” What follows is the kind of painful, scripted conversations you and I went through in beginner French, Spanish, German, and Mandarin. Kids are paired off to show how they can say things like,

“Nice to meet you.”

“My name is ___.”

“I like ___. Do you like ___?”

“I don’t know anything about that, but I would be VERY interested in what you have to say.”

One conversation is set up so that instead of the above, the second participant says, “I don’t like baseball. I’m done talking to you now.” The teacher inserts herself, with a big smile, and says, “WRONG way! Now, let’s see how to do it the RIGHT way!” (Please).

So as I’m watching this, I’m laughing, but in sympathy. I’m thinking a few things. Things like:

-Poor Brick! He looks bored out of his blessed little mind.

-Even though Brick’s social disability is undiagnosed, this is *not* the way to represent children with social or any other kind of disabilities. I mean, one kid walks around acting like a cat the whole time. Which, if you’ve got autism or Asperger’s or whatever, and you want to act like a cat, that’s fine. I love cats. Team Feline, rock on. But in The Middle, you can tell that kind of thing is being presented as, “Oh, look at these weird, freaky kids who can’t socialize.”

And the biggest thing on my mind: Nobody actually socializes like this! The only time I have ever seen or heard of anyone socializing like this is in scripted situations, such as those presented to people with disabilities. Nobody outside the bubble of Disability World talks and acts like this. Even PWDs don’t, unless they have been instructed to–via a script given by a TAB person!

That made me think: how many PWDs are currently living scripted lives? How many of their lives feel stilted and fake because of it?

Now, understand that I’m not talking about the “scripts” that get us through everyday life. There are huge moral “scripts” we should follow, like in the Ten Commandments, the laws of the land, and so forth. Your school or workplace’s dress code is a necessary “script” because nobody is gonna get anything done if a student or coworker pulls an Axl Heck and sits in the cubicle half-naked all day. No, I’m talking about the “scripts” specific to Disability World. You might recognize them.

Think about this. If you’re a TAB person, what do you do when you want lunch? You decide when to eat it. It might be noon on the dot, or you might get busy and wait until later. You might have lunch at 11:45 because you’re really hungry. You might stand at the fridge for eternity. You might heat up leftovers or decide to go out for a burger.

Of course, PWDs may do this stuff, too. But in many cases, what happens is something like this:

Parent/caregiver: “Okay, Kadeem, it’s 12:05 and time for lunch. Today we are having peanut butter and jelly. Let’s go to the table to eat.”

Fine–except that Kadeem may not be hungry right now. He may want a burger or slice of pizza. He may want to eat in front of the TV, like every other person on this planet does sometimes–or every day if they choose. But, if Kadeem even has the means to communicate these desires, he’s often told “no.” He gets responses like, “We’re not having that today,” “You need to eat at the table,” “That is not a healthy choice,” “You need to eat now because at 12:30 we’re doing this and that,” and so on. Meanwhile, Kadeem’s probably sitting there thinking, “Can I just EAT?”

Here’s another quick example that often happens between persons with disabilities and their friends or teachers who don’t have them. Alicia, who does not have a disability, normally participates in PE. But today, she’s on crutches because she fell and got hurt over the weekend. Her teacher gives Alicia the option to watch the class play, or go to the library or study hall instead.

Meanwhile, Alicia’s friend Maeve has a permanent disability. PE is part of her IEP, even though she rarely gets to do anything meaningful in it. Maeve has asked to be given alternatives, but is told no because, “Your IEP says you must participate in PE X hours per week and meet PE goals. Plus, you need exercise and fresh air.” (As if the kid can’t get those things any other way at any other time)?

Sometimes, the script doesn’t even work. Remember Brick’s socialization class? Well, the script is fine in class. But what normally happens in those situations is, a kid like Brick–let’s call him Carlos–goes out to try what he’s learned in the real world. He goes up to a kid on the playground, offers his hand for a shake, and says “Nice to meet you.” He says he’d be VERY interested in hearing about whatever the other kid is interested in–whether that’s true or not. If Carlos finds a kid who shares his interests, he might accidentally infodump or otherwise overwhelm his classmate. And what’s the response Carlos is likely to get?

Right–the other kid ignores him, walks away, or says something mean like, “You’re weird! Freak! Special eddy!” Or something equally as asinine. Carlos walks away confused and hurt because the script that was supposed to work, didn’t.

Guys, I’m tired of scripts. I’m tired of the temporarily able-bodied world deciding that just because they are “different,” PWDs’ lives must be scripted all the time. Why? The primary reason for all these scripts is, so that PWDs can be “more like us.” And as I’ve said before, that’s a load of hooey.

Flip the scripts. Heck, don’t even flip them. I say ditch them. Ditch them, and let PWDs live and learn as naturally as possible.

 

Inclusion vs. Integrity of the Activity

Happy September, readers!

I’m always looking for unique opportunities to keep my writing muscles strong. To that end, I currently write for an online publication that analyzes many creative pursuits (literature, film, animation, writing, etc.) On this publication’s website, you can search for topics of interest to you, and yes, I have searched “disability.” I wanted to see if people were analyzing representation or lack thereof, pointing to the merits of characters with disabilities, and so forth.

I didn’t find much of that, which tells me I need to get to work. But I did find an article that gave me the idea for a post here. Its author spoke about inclusive theater, pointing to groups such as Blue Apple and Spare Tyre. These theater groups are billed as inclusive, and are made up entirely or almost entirely of persons with developmental disabilities.

Personally, I like this idea. If you’ve been visiting my Nest for any length of time, you know I’m a theater aficionado and former theater student. You also know that because of mild cerebral palsy, I often got the shaft in productions. So when I see any activity, but particularly one related to the arts, welcoming PWDs, I support them.

But then I read the article detailing these examples of inclusive theater, and it gave me pause. The author, going by an Internet screen name, described Blue Apple’s production of Hamlet as fun and engaging. But this person was also quick to point out that lines were forgotten, props dropped, and cues missed. What lines were delivered, were delivered inappropriately or outside of context. The author’s intent was not to play up these shortcomings, though. His or her intent was to show that the actors at Blue Apple did not care about their mistakes because they were having fun. The overall message being, TAB actors should strive for the same sense of fun in their performances.

Again, I’m all for that. Today’s theater actors are usually classically trained. Like any of us in creative jobs, they’re taught mistakes are bad things. Mistakes are failures, and while it’s good to learn from our failures, they don’t help on performance night. Thus, actors (and other creatives, like me) often forget we got into our careers because they’re supposed to be fun. We do what we do because we experience intense passion for it. We do what we do for love, not money. If the actors with disabilities at Spare Tyre, Blue Apple, wherever, are able to remind us oft hat, then they have done their job at one level. We need that. We need what inclusive theater and other inclusive activities offer.

And yet…something about that article, about Spare Tyre, Blue Apple, and similar inclusive activities, bothers me. At first, I shrugged it off. I thought, “Your disability is mild, so you don’t have the right to feel what you feel.” (By the way, that’s bunk, for me and everybody else. You are never too disabled, or not disabled enough, to speak to an issue within the disability community). I thought, “Maybe you’re being bigoted, like those people you speak against.” So I sat and thought about it some more, and here’s what I came up with.

I will state again, inclusive activities are good. But they are not necessarily right. What do I mean? I’m speaking to the integrity of the activity. Now again, I don’t give a crap if a prop is dropped or a line is missed. And you better not tell me, “Well, those actors are disabled, so of course that’s gonna happen.” I’ll hunt you down. (Well, not really, but you get it). However, I question how inclusive and beneficial theater, or any activity, is when its entire integrity is put at risk. When entire paragraphs of lines are missed and delivered out of context. When props never make it to the stage. When, because the members of an inclusive sports team have developmental disabilities, the ball never makes it down the court or into the end zone. When an inclusive book club never moves beyond the most basic children’s picture books.

I cannot stress this enough: When these things happen, it is not the fault of participants with disabilities. I will go to my grave defending a PWD’s right to act in a play, shoot a basketball, and read a book. (Dear Lord, will I defend the right to read a book)! What I won’t defend however, is TAB people who say, “This is inclusive,” and yet only “include” PWDs. I won’t defend the rationale of, “To make X activity inclusive, we have to throw the rules out the window.”

No. Absolutely not. Sorry, wrong number. Those rationales don’t benefit anyone, least of all the people with disabilities themselves. First of all, when you call an activity inclusive, it means including both PWDs and those without disabilities. It means letting them work together, and teaching them how. Otherwise, your activity is segregated. Second of all, a truly inclusive activity will modify the rules and accommodate differences, but it will keep the activity’s basic purpose and rules.

Example: Let’s go back to the theater. A high school theater director wants to include students with different disabilities in her cast. The wrong way to do that is what we discussed. The right way would encompass these things:

-Getting to know the students first. Who actually wants to be in the group? What abilities do they have? Julie, who has a mild disability, will probably be able to handle a traditional speaking and moving. Andre, who uses a wheelchair or mobility aids, can also have a speaking role but might need accommodations (e.g., not being onstage during large chorus numbers unless the cast is taught to maneuver around him or incorporate him into their dance breaks, choreographed walking, etc. If Charlie has Down Syndrome, he might need a simpler speaking role or would prefer to paint scenery, hand off props, help make costumes, and so on.

-Assigning tasks with dignity. In other words, don’t make all your cast members with disabilities do the grunt work because it’s easy. And, don’t shame someone who can’t do the grunt work and say, “You’re not being a team player.” (Yes, this happens. Apparently, the harder and dirtier the work, the more people disrespect you if you can’t do it, even if they themselves don’t roll up their sleeves).

-Maintaining expectations. When are your TAB actors expected to be off book (that’s saying lines without the script, if you’ve never done theater). Then your speaking actors with disabilities should be held to that same deadline. Is a TAB singer still missing a crucial note or passage because he or she won’t practice? If an actor with a disability is doing the same thing, he or she should be held accountable. You get the idea. Also, be careful about giving someone too much or too little to handle. One actor with an intellectual disability might be able to play or sing lead. Another might not. (Refer back to getting to know the people in your activity).

-Consider different modifications and accommodations. Are you a basketball coach with only one team member in a wheelchair? Instead of having someone else shoot for them, lower the hoop, but make that person’s shot worth the same amount of points as everyone else’s. Does one of the sopranos in your choir have CP and use a wheelchair? Don’t assume she has to sit off to the side because she can’t stand on risers. Look into modifying the risers or if you can’t, do you really need the things?

Again, inclusion is a great thing, but so is integrity. When an inclusive activity’s entire purpose is changed, you tend to get people who say, “Well, naturally the bar was set low because of disabilities. It’s still inspirational and cute.” Wake up and smell the coffee, people. We’re past inspirational and cute, and even fun. Are those things bad? No. But we can move past that. We can move the disability community past that. Instead of saying, “You’re fun and cute,” let’s start saying, “You’re creative, intelligent, and able to do this as part of the team.”

Blog Quickie: Universal Design: Not Just for the Elderly

Hi, readers! Here’s another quickie to wrap up August. Don’t worry; I’m already brainstorming ideas for September.

Recently, I gave myself a Pajama Day. Those are rare days meant for staying in my jammies, relaxing, reading, and basically being lazy. They aren’t days for thinking about my current job search, how I’m going to achieve the next level of independence, or even what I’m going to write next. But you know what they say about the best laid plans of mice and men (women).

So anyway, I’m channel-surfing, and I come across an infomercial aimed at senior citizens and their loved ones. It explained as seniors age, their homes may not be the safe places they once were. Accessibility was stressed, and tips for better accessibility were given. You know the classics–installing railings on the stairs and grab bars in the bathrooms, increasing wattage in current lighting, and watching out for things a senior might trip over since falls are a bigger concern as we age.

But, you got it–those infomercial-makers didn’t mention younger people with disabilities. In our current world, why should they? While well-meaning, the vast majority of TAB people see disability as affecting only the elderly, or young children. When they hear the word “disability,” they might not think of an active teenager, a college freshman, or a thirty- or forty-something navigating the workforce.

There are several reasons for this discrepancy, most of which we’ve gone over and most of which can be tied to sheer ignorance. No, not the bigoted kind (usually). This type of ignorance is usually what happens when people honest to goodness don’t know. After all, as we discussed last post, disability is something you don’t think much of until it affects you. I’ve even been guilty; because I need less accessibility help than some people, it can catch me off guard when a place isn’t as accessible as it could or should be.

Fortunately, there’s always a way to learn about what you don’t know. There are ways to correct assumptions, such as the one that says, “People with disabilities are primarily old people.” A quick primer on how to do that:

-Ask. If a PWD looks like they need help but don’t ask, speak up. Don’t be rude; for example, never grab a blind person’s arm and just lead them somewhere. But you can say something like, “You look like you’re having trouble/are stuck. Can I help?” And if you are a PWD, ask for help. I know it’s hard sometimes. I struggle with it a lot. But–preaching to the choir–if you don’t say anything, you may contribute to ignorance.

Also, ask the PWDs in your life what they need that they’re not getting. Ask them about the accessible places they like to go. If you want to go somewhere inaccessible, say something like, “How would you like us to handle this?” For instance, let’s say you and your mixed-ability group are going to a museum or historical home. Parts are accessible, and parts are not. For those that are not, don’t just leave your friends with disabilities sitting on a bench. Offer to take pictures or, if the site does not allow that, pick up souvenirs related to that area. Is there a guided tour with headphones? Maybe your friends can listen while you look.

-Research. How much do you truly know about the disabilities your friends, coworkers, family members, or potential dates might have? Do some homework. Again, this starts with asking them, but credible websites can help. Note: Do not go to a site like WebMD, and don’t go straight through Google. Medical sites tend to present worst-case scenarios, and what you find on Google may do so as well. Instead, look up myths and facts about X disability. Search for disability-positive blogs, especially those written by PWDs themselves. Search out memoirs of people like Nic Vuicjick, who lives a full and positive life with no arms or legs.

While you’re researching, look into universal design. How big a priority is it where you live? Are people asking for it? Put on some “disability glasses.” In other words, go out with a friend who has a disability, and ask him or her to show you some common accessibility issues. If a friend or family member isn’t available, you can do this on your own. You’ll notice a lot of things, like stairs without railings, heavy doors, buildings without elevators/escalators, low lighting, blind corners, etc. Take notes. Then present them on social media, in a letter to the mayor or a local news editor, or in any sort of campaign that will raise awareness of universal design.

Side note: I’ve heard of situations where medical professionals study this kind of thing with TAB people. The TAB person uses braces or a wheelchair, or no-vision glasses for awhile, and reports how it feels. I’m not against this, but it may not be the best course of action. Many clinics and hospitals might see this as a liability waiting to happen. Worse, you could be accused of faking a disability to get attention or sympathy. I strongly caution: do not do this without serious thought, permission from a hospital/clinic/university department, and close supervision.

-Make a Change. Volunteer to help build ramps, install curb cuts or elevators, or otherwise add to universal design in your community. Do it with your coworkers, your house of worship, or a group of friends (you may need some permits). Invite PWDs to participate as well. They’ll be the ones to tell you if you’re getting it right or meeting everyone’s needs. Remember, sticking a ramp up in one spot often does not cut the mustard.

Components of Universal Design:

Besides “the classics” mentioned earlier, here are a few more things to think about. Please note that these aren’t all physical. Universal design means exactly that–universal. If our peers with learning, intellectual, or emotional disabilities aren’t being served, we aren’t done.

-Bright masking tape on the edges of stairs. This is a big help for people with low vision or perceptual disabilities.

-Sturdy handrails/grab bars in places other than bathrooms. Even a small set of stairs can be steep or overly narrow.

-Accessible building materials. PWDs often have trouble on stone staircases, gravel pathways, or stairs made from slats of wood, metal, etc. If at all possible, avoid this type of setup. If it’s already there, or absolutely needed (i.e., stone maintains historical integrity) see other design options as listed above.

-Shallow tubs/showers/walk-in options. Again, this doesn’t have to mean compromising interior beauty. But if a shallow tub is safer than a high claw-foot, consider using one. Or, make sure that claw-foot has sturdy grips, or even a ramp leading in or out (yes, this can be done).

-Versatile learning materials. I’m mostly speaking to schools, universities, and libraries, but this is true at home as well. Does your child have trouble gripping small game pieces? Look into special-ordering bigger ones. Is your kindergartner struggling to tie his shoes? Maybe he needs specially designed laces that stay tight with a quick pull. Your teenager with dyslexia may benefit from books on tape, oral reports, and highly visual learning options. College-age students with Down Syndrome can in fact take university classes if they are presented in language they can understand. (Yes, auditing is an option, as is authentic career training–not “required volunteer hours” stocking shelves. But it is my personal belief that everyone can benefit from real academics on some level).

-Hey, who turned out the lights? I had this problem during graduate school when my university competed with our rival to save energy. One way we did that? Using low lighting in hallways. Not a huge deal for me, but I already don’t see well. Add in the fact that I have zip peripheral vision, and I could’ve tripped over something or crashed into someone without ever seeing them coming. Fortunately, my parents and I complained to the disability service office, who let the dorm administration know they committed a no-no. Even if the PWD in your life sees fine, keep the lights on. At night, turn on a hallway night light. Make sure the PWD in your life keeps a flashlight, fully charged phone, or battery-operated lantern handy if power outages are a concern.

-Regular check-ins. This is mostly for university dorm supervisors, landlords, etc. If you know a PWD lives in your building, check in regularly to make sure they’re getting around okay and feel safe. Do you have monthly fire drills? Give that person notice, and be on standby to help him or her out of the building if necessary. (This happened to me once; I was not given notice of a middle-of-night fire drill and had to walk down three flights of stairs to get out. I was okay, but spoke to the dorm supervisor the next day because let’s face it, that’s not safe). If you don’t have emergency protocol for residents with disabilities, get some going. Their safety, your reputation, and your ability to run your business, is on the line.

-Inclusive classrooms and leisure activities. I’m not gonna spend a lot of time on this one, but I can’t stress this enough. Letting a PWD sit in the back of a general ed classroom, or “inviting” them to be an equipment manager, mascot, or extra when you know they can do more, is not inclusion. Inclusion means everyone works, plays, learns, and talks together.

-Animal-friendly places. This last one is tricky, because a lot of people claim their pets are service animals, but they’re really gaming the system. However, service animals are legitimate accessibility concerns, and they do exist to help people with blindness, deafness, PTSD, what have you. First off, if you have a disability that requires a service animal: get him or her registered. Your service animal should always wear identification, whether that’s tags, a vest, or something else. For the TAB population: if you run a business such as a store, restaurant, or hotel, make it clear these animals are welcome. Brush up on etiquette; for example, don’t pet a service animal–they’re working. Get to know the animal and his or her handler–two friendships for the price of one.

The world is a hard enough place without telling certain populations, “Sorry, we don’t have what you need.” Universal design is often simpler than we think, so do your part to get it recognized and used.

 

Blog Bonus: Iceland’s Frozen Heart Agenda

Hello readers, and welcome to another August bonus. I’d almost call it an emergency bonus, because although I debated writing about this, it calls to be written. Soon enough, it will be old news.

If you read the title, you probably know what I’m talking about. According to several news and social media outlets, such as CNN, Twitter, etc., Iceland is in the news for a medical “breakthrough.” They are “on pace” to completely eliminate Down Syndrome in their country through abortion. Currently, the abortion of Icelandic babies prenatally diagnosed with Down’s is nearly 100%.

Now, before we go further, let me make clear what I am not here to do.

-I am not here to debate abortion in itself. I am pro-life for religious, moral, and ethical reasons. You can be pro-life or pro-choice and I will still respect you.

-I am not here to condemn women who have already had abortions, for any reason. Considering that abortion is presented as the “only” or “best” option in many cases, I tend to think the mothers are just as victimized as the babies. This is especially true when a baby is aborted because of Down’s or another disability. That is, the mother is basically told, “Abort or care for this baby long into retirement; abort or give this baby a life that isn’t fair.” No. What’s unfair to both parties, is that rhetoric.

-I am not here to say babies with Down’s Syndrome are more or less valuable than babies without it, or to suggest any baby be aborted for any reason.

With that out of the way, let’s talk.

This scares me, folks. It scares me and makes me downright mad–the kind of mad that leaves you with an urge to punch something. It leaves me feeling helpless, because other than saying how I feel, signing petitions, and praying, what can I do? (Yes, I know those things are taking action. But it’s kind of hard when what I really want to do is hop a plane to Iceland, find someone who thinks Down Syndrome elimination is positive, and say, “What the HELL are you thinking????”)

Then again, Iceland isn’t alone in its thinking. In America, about 90% of prenatally diagnosed babies with Down’s are aborted each year. Down Syndrome is upheld as one of the most common reasons for abortion, as well as one of the disabilities we must work hardest to cure or eliminate. It’s right up there with autism. Parents live in fear of a Down Syndrome diagnosis for their unborn children–any disability diagnosis really, but especially that one.

And of course I have to ask myself, why is that? Down Syndrome is the most common chromosomal disorder, affecting 30% of our babies, who grow up to be children, who grow up to be adults. In other words, for every 100 people, we’re choosing to kill 20-30 because they were born with an extra chromosome. We’re trying to eliminate an entire population of people, using eugenics. We’re “selecting against” Down Syndrome the way dog and cat breeders select against certain colors, markers, or other breed traits. Forget Iceland–what the hell is everybody thinking?

Well, okay, I’ll try to answer that. I know what people might be thinking because I’ve heard and seen the arguments for days. Here are a few common arguments and my answers to them:

-“It’s better to have a healthy child than a child you have to care for all your life.” Okay, first, the presence of a disability does not equal ill health. Disability is not the opposite of health; sickness is the opposite of health. Down Syndrome or other disability does not equal “disease.”

As for caring for the child all your life, I have two things to say to that. One, every parent, whether or not their children have disabilities, will care for their children as long as they can no matter what. I’m over thirty and my mother still tries to baby me. She calls my twenty-seven-year-old brother to make sure he’s okay. She and my dad still buy us groceries, help with household issues, etc. And another thing: that brings me to the social circles of people with Down Syndrome. Too often, the lives of these people revolve around their parents. Their parents are the primary providers, caregivers, friends, etc. That tells me society at large is doing a lousy job. Instead of abortion, let’s focus on providing services so that people with Down Syndrome have options other than their parents.

-“Your child will likely end up in a home/needs to be institutionalized.” For the majority of individuals, this is not true. Even for those with severe Down Syndrome, it doesn’t have to be true–unless your community lets it be. This brings us back to the question of authentic, community-based services that highlight competence, vs. institutional care that highlights incompetence and makes PWDs look abnormal or subnormal. If you learn nothing else from this post, learn this: As long as we consider PWDs primarily different, their futures will never improve. As long as we consider PWDs primarily different, abortion, institutionalization, and poor quality of life will remain on the table.

-“Your child will suffer.” This is the basic argument that sums up objections like, “Your child will not be able to do X/will not be smart/will never be this person, go this place, have this experience.” My response to that is, human suffering is inherent. It’s the world we live in. If people with Down Syndrome suffer more than everybody else, whose fault is that? Certainly not theirs.

-“You’re not ready for this.” Really? Who’s really ready to raise a kid, disability or not? I’d venture to say nobody is. If you need financial, physical, or emotional help, get it. It’s out there. Push as hard and as long as you have to. Don’t make an innocent baby pay the price.

-“You don’t deserve this.” This one, I’m not really gonna touch. It makes children with Down Syndrome seem like burdens, monsters, and things nobody wants. Yes, things, not people. But they are people.

So, now we’ve covered some arguments as to why someone might abort a kid with Down’s, or any other disability for that matter. But that leaves me with one more question: why babies with Down Syndrome, specifically? Why have they been marked for elimination when others are not, at least not at a rate of 90-100%? Here’s a quick list of the top reasons I came up with:

-Down Syndrome is a visible disability, and a highly visible one at that. It’s one of the only ones you can name on sight. Many prospective parents don’t want to be associated with that.

-Down Syndrome is first and foremost an intellectual disability. Many parents are afraid of having a child with this kind of disability because they fear what will happen to him or her. As in, “Will he be able to go to school? Can she have a job? Will he ever live on his own? What will she be able to learn, if anything?”

-Down Syndrome is chromosomal, and it has been proven that your chances of having a child with one go up if certain factors are in play, such as age. The higher the odds, the more anxious prospective parents become.

-Because of the first two points above, people with Down Syndrome are often discriminated against or otherwise treated poorly.

Fortunately, there are answers to these reasons. I’m not going to spend a lot of time on them but here are a few things to think about:

-A visible disability is not the end of the world. It doesn’t make someone “more disabled.” Also, a visible disability is not a reflection of you as a parent. It simply means you gave your child an extra chromosome, just like you gave them blue eyes or curly hair. Big deal.

-The fears associated with Down Syndrome largely exist because of stereotypes, lack of understanding, and continued predictions of grim futures for those living with it. It’s not the responsibility of the person with Down’s to change those things. It’s our responsibility. Instead of treating these people as “other,” we need to say, “They are valued members of the community, and we will treat them as such.” This includes providing services not only to the individual, but to their families. As in, don’t encourage a woman to abort a baby with Down Syndrome because of the expense of care. Give her avenues to get that care. Adoption agencies, keep your heads up. When you take in a baby or toddler with Down Syndrome, presume he or she can learn, can do things, and can live a fulfilling life. Make that clear to prospective adoptive parents.

-Although genetic and other factors exist, they are not guarantees of one outcome or another. Many prenatal Down Syndrome diagnoses are wrong. For those that are right, well, there’s still a ton of hope for that baby. He or she will grow up to be a unique, beautiful, deftly created individual with the potential to be more than you thought–if you allow that to happen.

When it comes to babies with Down Syndrome, Iceland’s mind seems frozen shut and its heart ice cold. America isn’t far behind, but we can change the trajectory if we choose. I close out today with a plea: Speak up. Think about what abortion of these babies tells the rest of the world. These babies have no voices, but you do. Say for them, “I have the right to live.”

 

It Takes a Kid–But it Shouldn’t

Hello readers,

In this era, we’re probably all familiar with the saying, “It takes a village to raise a child.” Despite its association with one political party and platform, this saying was not always political. It’s actually an ancient African proverb that holds true in African and other cultures. Many Americans, myself included, would like to see us “bring back the village” in some ways. That is, we need to bring back the community. We need to allow the community, not the government, to take care of its own. We need to look to the community’s elders for wisdom and discernment, and its younger generations for innovation and vitality. Yet as we “bring back the village,” we also must remember one crucial thing about it. The village only works if everyone works together, if experiences are not entirely limited to one subgroup.

I bet you have an idea where I’m headed, and you’re right. I got the idea for this post after an exercise date with a friend. My friend, A, is a longtime reader of this blog and has been part of my life since I was little. She’s also one of the most open-minded people I’ve met when it comes to disability, inclusion, and the other issues covered here. One of her sons has Asperger’s, while the other is undiagnosed but shows spectrum traits. Her daughter was born with a cleft lip and palate.

We talk semi-frequently about disability issues during our workouts and other time together. Recently, we spoke about the different “levels,” or degrees, of disability and how only certain degrees are served or recognized. For instance, many people stereotype disability as being only something the elderly experience. Others assume disabilities like cerebral palsy are always severe or incapacitating. Still others, especially many I’ve met, assume that if your disability is mild, you don’t really need help and support; you’re making things up and trying to cheat the system.

We both agreed this was insane. That’s when A said, “More people need to know about the levels…I didn’t know as much as I do now until [my daughter] was born with a cleft lip and palate.”

And I thought, wow. Cool–blog post alert! Because how true is that across the board? How many people don’t know the ins and outs of disability, until they have a child with one? You could almost say, “It takes a kid to understand disability.” Meaning, unless disability personally affects you, especially your parenting journey, you won’t “get it.” That’s not true for everyone, of course. Thankfully there are TAB people who don’t have children with disabilities or who are not otherwise affected, but who do stand up for our rights. Disability is not “personal” to them, but they do recognize PWDs are human beings who are more like them than different from them.

But for far too many of us, disability has to become personal before we get involved–sometimes before we even recognize it’s there. I can’t tell you the testimonies I’ve heard or read that begin with, “Until I had a child with X, I never understood/thought about/felt like…” and so on. Now, those testimonies are great. If a child, teen, or adult with a disability helps you think in new ways about anything, then that means PWDs are doing their jobs. That’s a big part of why I think I’m here–to provide a new perspective on stuff people don’t think about. I question though, why it seems to take being personally affected for TAB people to really think about, understand, and respond to disability.

Now, I know the argument here. “The same is true for every minority,” you might say. “You’ll never understand what it’s like to be black because you’re white, to be Catholic because you’re Protestant, to be LGBT because you’re straight.” Okay, I’ll buy that, 100%. I never will understand those things, because you’re right, they’re not what I live with. I can sympathize and empathize, which I try to do, but I’ll never really know. And you know something? That’s okay. You don’t have to 100% understand someone else’s experience to empathize with them, to be a decent human being.

Here’s the thing, though. Disability is somewhat different from those other minorities. Yes, I will never have black skin, but I do understand what black people have endured throughout history–because parents, teachers, black friends, and others taught me about it. I understand because I see black people out and about every day. I hear them talk and read what they write. I see the issues that concern them and why they feel what they feel.

I wasn’t raised Catholic. But I do have Catholic friends, and I have asked them to share their faith with me. I recognize them as brothers and sisters in Christ who happen to have different preferences and beliefs in certain areas. If I felt led, I could convert and become one of them.

I’m straight, and I’ve never experienced attraction to anybody other than heterosexual men. But again, I interact with LGBT people and understand what they mean when they say, “Love is love.” I have wrestled, sometimes hard, with the idea that my faith does not condone LGBT marriage, relationships, and what have you. I have sat in my prayer chair and said, “God, you created these people and love them–I know you do. As long as they aren’t hurting anyone, what’s the harm and why is it my business?” I may never have satisfactory answers, but: I know how, when, and whom to ask.

With disability, that doesn’t always happen. Sadly thousands, perhaps millions, of PWDs are rarely able to go out in public. Some of them haven’t been given the means to communicate, so we can’t ask them our questions and get answers. People with disabilities speak, write, and tell us their stories, but not everyone hears them. Often, PWDs only get a platform or audience in an inspirational setting, such as church or temple. There, the audience is usually limited to the people they already know, or people who have a vested interest in disability (back to parents and guardians again). We don’t know what we should, unless it’s personal–and that needs to change.

Think about this. Disability is not the only minority, but it is the most unique one we have. It’s not like black skin, something you do or don’t have, period, on a permanent basis. It’s not like religion, because you can convert when and if you want to. Many people are born with their disabilities, but others are not. You can be TAB one day and the next day, fall off your roof and sustain a disabling head injury. You can be TAB one minute and the next, getting used to the paralysis you sustained in a car accident. You can live a full and healthy life, but disability can start to set in as you age–as it will for many of us, perhaps the majority. People become members of the disability community every day. Every day, new stories are added.

With this in mind, my plea to you and to the world at large is, don’t wait. Don’t assume that because you and your family are healthy, disability has nothing to do with you. Don’t spend five to ten minutes with the one PWD you know and call it a day or a week. Instead, keep these things in mind:

About 20% of the American population has some kind of disability. That’s around one in five. Five. Count five people. One of them may be living with a disability, whether you can see it or not.

In a standard classroom, count nine students. Student number ten probably has some form of disability and is learning with modifications or accommodations. If you don’t see that student, he or she may be segregated–and that’s another issue.

Go out in public and look around–really look. How many ramps or curb cuts do you see? How many Braille menus do you see? How many accessible rooms does your local hotel have? How many disability-related books, fiction and nonfiction, are in your bookstore or library? Is anyone with a disability playing sports on a community team? You may be surprised at how “invisible” disability actually is–and that’s wrong.

Ways You Can Make it Personal:

Even if disability doesn’t affect you or someone you know, you can make it personal. It’s time to get personal, to bring back the village where disability is concerned. Here are some small steps you can take:

-Look for universal design, and campaign for more of it. Do the architectural students at your local university know about it? How many houses with universal design does your local real estate agent sell per year? Are clients asking for universal design, or do they even know it’s an option? Make people aware, and explain why universal design helps everybody. I mean, disability or not, my guess is you’re gonna slip and fall in the shower or trip on the stairs at least once.

-Research representation. This is an especially great project for teachers, and apropos since it’s back to school season. Read a book whose main character has a disability, or a memoir by a PWD. How many famous PWDs do you know, and what accomplishments have they been credited with? Post stories, blog posts, TED talks, anything that will increase representation. Recommend books to your friends. Question disability stereotypes in the media. Buy your kid a doll with glasses, a hearing aid, or a prosthetic.

-Get to know your schools and career services–how inclusive are they? How inclusive is your community? If you have a group home, how often do you see its residents in public? What services and amenities do group homes offer? Oh, this is a biggie: who in your community is using Vocational Rehab and other job services? Are they on some kind of waiting list for services, and how long have they been on it? Do your homework, and then act on what you find. Ask yourself, “What can I do to make sure these services actually serve?” Again, raise awareness on social media. Hang out in inclusive groups where and when you can. Write and call your senator or congressman. Hound them!

-Ask someone who knows. You don’t know what goes in an IEP? Ask a parent or teen who’s sat in on the meetings. You don’t know what testing modifications your schools offer? Ask the teachers and administration, and push for more options where necessary. You’ve heard of machines that allow PWDs to speak, but have only seen the PWDs in your community use picture boards? Ask what can be done to bring new options in.

-Donate your time, your effort, and your money. Technology opens an entirely new world for PWDs. Ask a local school if you can donate iPads, speaking machines, and other equipment, or help raise funds to get it. (More on fundraisers in a future post). Donate disability-positive materials to your bookstore and library. If you’re an educator, consider offering Disability Studies or Disability History as a graded course and/or elective, with the administration or department’s okay. Chaperone inclusive field trips. Open your business to PWDs, or scope out and recommend businesses that offer real work for real pay.

-Mount a protest. This one’s a little tricky in our current climate, but considering the abuse and marginalization PWDs go through, I’m shocked more of us aren’t protesting. Remember too, you don’t have to scream and wave signs. A protest can take the form of a letter-writing or social media campaign.

-Start a blog or a website dedicated to disability issues. When you learn something new, write about it.

This is by no means an exhaustive list, but it’s somewhere to start. Remember, having kids with disabilities will change your journey and make you think in new ways. So will sustaining a disability yourself. But don’t wait for that. Bring disability back to the village–as a vibrant, important part of the community that needs to be represented and served.

Blog Bonus: Speak No Evil: Constructive Criticism and PWDs

Hello readers, and yes–ding-ding-ding! Welcome to the bonus round!

I got the idea for this post after discovering Travel Channel’s Hotel Impossible. In this show, Anthony Melchiorri, hotel guru, comes to the rescue of failing inns and hotels across the U.S. and Canada. They’re failing for good reasons, including incompetent owners, lazy and rude staff, and often, disgusting accommodations. It’s not uncommon to see Anthony walk into a room, observe something like major dust, frayed wiring, or mold, and ask,

“What the hell is this?”

After observing these horrors, Anthony usually confronts the owner and/or general manager with what he’s seeing or not seeing that needs to change. He’s usually pretty calm and professional about it, but sometimes loses his cool. And that’s fine. I’d lose it too if I’d just discovered rat poop, a peeling ceiling, or black mold in my hotel room. But I have to say, his criticism isn’t always 100% constructive. Sometimes the illustrious Mr. Melchiorri says things that make people feel condescended to, as we all do at times. And that’s what led me to this blog.

Now, if I owned a hotel or any other business and treated it and the people inside it like crap, I’d want somebody to kick me in the butt. However, there are certain things they could say, that would make me feel like they were getting too personal–in other words, bringing my cerebral palsy into it. I’d venture to say other PWDs might feel the same way. We need constructive criticism like everybody does. But too often, TAB people take our disabilities as a license to go too far. They take disability as a sign they should be harsher than the situation calls for. I’ve had this happen a number of times. Sometimes the actual criticism was deserved and sometimes not, but the packaging got in the way. So here’s what I’ve gleaned from those encounters, and from watching people with disabilities interact with the temporarily able-bodied world.

Things Not to Say When Offering Constructive Criticism to a PWD:

-“You know better than that.” Why? Because it sounds like you’re talking to a recalcitrant child. Yes, we often do “know better,” but we don’t know how to fix it because nobody showed or told us how. It’s the old catch-22 of, “You’re too disabled to function but you should do everything 100% independently because that’s how everybody else does it.”

Sometimes, the PWD actually doesn’t “know better” either, because he or she hasn’t been taught better. In other words, Gage has a cognitive disability. Because he is 16, but his mental age is estimated at 8, everybody treats him like he actually is 8. Then, when he acts like an eight-year-old, but shouldn’t, he gets blamed for it. Not cool, people. If you want people to act their age, treat them like their age first.

-“I shouldn’t have to tell you this.” This one came out of Anthony Melchiorri’s mouth to a TAB hotel owner. I’ve also heard it come out of others’ mouths. I get that you’re frustrated. I get that you may have said what you’re saying two million times. Here’s the key, though. If you didn’t say it to me, and if you didn’t make sure I was clear on what you wanted, then don’t come back and say, “I shouldn’t have to tell you.” Too many times to count, I have seen or heard temporarily able-bodied people give PWDs unclear directions, or no direction, and then get frustrated when those directions aren’t followed. This often happens with people on the autism spectrum, or those with ADD/ADHD, but none of us are totally immune.

“-What did I just tell you?” I don’t know–what did you just tell me? If you didn’t say it, don’t expect me to know. This really isn’t a good thing to say to anyone, but PWDs get it a lot. It’s another of those statements that make you sound like you’re talking to a kid.

–“Your [fill in disability here] is no excuse.” I didn’t say it was, and as far as I know, I’m not acting that way, either. Now sometimes, as with everything else, you will get a person who tries to use disability as an excuse to do a poor job. This is often the person who also threatens to sue you all the time, or blows up over perceived slights. But most of the time, people with disabilities aren’t going to use their diagnoses as excuses. We’ve been defined by diagnoses our entire lives; we don’t let it happen if we can help it.

Another note on this one: TAB people often say this because they are too shortsighted or lazy to provide needed accommodations. In other words, Amy works for a corporate company, but has a visual impairment that makes it difficult to interact with certain computer programs. She’s asked for help but doesn’t get it, so she has to muddle through as best she can. When she turns in a poor presentation or report, the first thing her boss says is this. No, Mr. or Ms. Boss. What you should say is, “Wow, I should’ve listened. What do you need?” Also, be patient while the PWD in your employee is figuring out accommodations. Sometimes you’ll offer us something that doesn’t work. If we approach you and ask for something else, react professionally.

-“You are ineffective/unable to do X, Y, Z.” That might be true, but in many cases, it’s not. And, as you can probably tell, the words “ineffective” or “unable” make us feel like you’re saying, “Of course you can’t because you’re disabled.” Don’t say this, period. Also, don’t tell us we haven’t succeeded at a task, or never will, until you’ve given us a level playing field and ample chance to prove otherwise. No matter how compassionately you use this statement, it’s usually a dig.

–“Rick/Tess/Marcos/Beatrice can do this. Why can’t you?” This is often meant as, “Why can’t you be as successful, effective, fast, or adept as this person?” It’s unprofessional to say to anyone, because you’re comparing two people by name and favoring one over the other. But when you say it to a PWD, it dances dangerously close to the bigotry line. Just don’t go there.

“You…” Counselors, managers, mediators, almost anyone, will tell you to beware of any statement beginning with “you.” It might be a perfectly constructive statement, but if it starts with “you,” it comes across as a big fat finger pointing in the other person’s face. Don’t do it, whether the other person has a disability or not.

What to Say Instead:

“Do you have any questions about what I just said?” And then give the person time to think. Answer their questions as thoroughly as possible.

“I’ve noticed you’re doing/not doing X. How can I help you with that?”

“What do you need from me/us/this environment?”

“I’m seeing consistent problems with X. Why do you think that is?”

“I need you to do X differently.” Then explain what “differently” means, in concrete terms. If you can’t do that, rethink what you need from the person before approaching him or her.

“Here’s an example of what needs to change…” Then use a concrete and recent example. In other words, don’t wait until the February meeting to discuss something someone on your team got wrong on January third.

“[Fill in whatever went wrong] isn’t like you. Is there something going on?” This is often a great alternative to, “I shouldn’t have to tell you” or “You know better.”

“Are the accommodations you have working for you?” Ask this regularly.

Other Tips:

–Start with the positive. I spent a lot of time in writers’ workshops during university. All my professors had the same rule: before you constructively criticize, find one thing in the piece that works. They devoted several minutes to positive feedback, which made the negative stuff much easier to swallow. It also kept me, or the writer being critiqued, from feeling defensive.

-Speak face to face. Trouble often starts when 2-3 people get together and talk behind someone else’s back. I had this happen during my first teaching job. Rather than tell me they were concerned about me and having problems, several of my colleagues had powwows about me beforehand. To my face, they told me things were fine–and then chastised me for being blindsided. This happens to other PWDs, especially in the workforce, and it’s often made to sound like, “Well, you’re disabled, so of course you had no clue, but…” Ugh. If you have something to say, say it to the person’s face.

-Keep it private. No one, disability or not, likes to be criticized in public. Unless you’re going to point out general mistakes or tell each team member in turn what’s going right or wrong, keep the session private.

-Keep it short. Please, for the love of all that’s holy. This is especially true for PWDs. Remember, we’ve been told what’s wrong with us all our lives. That doesn’t mean you can’t speak up when it’s warranted, but Lord, don’t give me a ten-item list of what you want me to change.

-Don’t play the power game. In other words, don’t loom over a person in a wheelchair–or anyone else, for that matter. Look the person in the eye. Don’t turn your head away or cover your mouth. Don’t interrupt when you’ve asked the other person to speak. Especially to PWDs, this says, “I have the power, not you. Because my body and brain work ‘better,’ I call the shots.”

People with disabilities will always be more like people without them than different. The need for constructive criticism is no exception. However, too many PWDs are hearing, “You are unable/incompetent/worthless” in a way that is couched as constructive criticism or even compassion. I say it’s time we give that a facelift worthy of the Waldorf.

Lost Girl

Hello readers, and happy August. One month closer to autumn, and another month here on the IndependenceChick blog. Let’s get started.

One of the joys in my life is my six-month-old niece, my brother and sister-in-law’s first child. She was over at my place the other day, and she’s a delight. Her arms and legs never seem to stop moving, and she’s probably the most headstrong and emotional baby ever born. She’s usually happy, but when she’s hungry, you better feed her NOW or suffer the consequences! She’s eager to see, hear, and experience everyone and everything, so getting her to nap can be a struggle. We call her a “wiggle worm” because it’s rare that my niece actually wants to be held and snuggled. Even in your arms, she’s ready to move and shake the world.

Sometimes this can be difficult. For instance, I rarely hold my niece right now because she’s not yet sitting up, and I don’t want to drop or hurt her. I simply can’t hold her weight without assistance. I’ve helped out with her, but never alone, simply because some of my fine-motor skills aren’t there. And that breaks my heart at times. It makes me wonder who do I think I am, dreaming of having a family? Who do I think I am, thinking I could safely raise a baby to adulthood? Sometimes it makes me resentful–why didn’t anyone ever teach me the finer points of raising a baby?

And then I remember, well, you can’t teach that. To a point you can–that’s why we have home ec and parenting classes. But in the reality of day-to-day life, you just don’t teach How to Raise a Kid. You learn it on the job. Except, most people with disabilities aren’t allowed to learn on the job. They’re expected to learn in highly prescribed, regimented, and monitored manners. They’re expected to check off goals written and handed down by other, temporarily able-bodied people, and to meet others’ standards of success before moving on, if that ever happens. PWDs live their lives largely according to Plans, whether those are IEPs, IFSPs, IHPs, Person-Centered Plans, or something else.

Within the Plans, a certain level of safety exists. If you’re a parent of a child or teen with a disability, an IEP reassures you and your student that he or she will receive the education and accommodations he or she needs. A Person-Centered Plan can give an adult with a disability the reassurance that his or her life is going in a certain direction. But here’s what gets me, folks. At some point, the Plans have to go away. That’s life. There’s not a paper, or a rule, or a goal, for everything you’ll ever encounter. There are certain things we can’t teach people, whether they have disabilities or not.

That fact makes me wonder…is there life after the IEP? Well, I take that back. Of course there is. The real question is, how can a PWD expect to live it without guidance–and how much guidance should we give? What kind of guidance should it be? When will we give PWDs the chance to learn on the job, like most people do every day of their lives?

Let me put this in practical terms. Like most students, I went to school for twelve years. Unlike the majority, I had an IEP. In college, the IEP went away, but that wasn’t a big deal most of the time. I was fortunate because I could advocate for myself, although that was a crapshoot at times. Sometimes people just don’t want to cooperate, or insist on believing the worst of you, because you need something different. But the point is, not having the IEP was kind of freeing.

But then college ended. Graduate school ended. I didn’t want my IEP back. Heaven knew I’d had enough of people saying, “You will do X and Y with 90% accuracy 2 out of 3 times.” And heaven knew I didn’t need anymore occupational and physical therapy to learn “life skills.” Let me be as blunt as I can. I can’t tie shoes, but that’s why slip-ons were invented. Just because I can’t cut food with a knife, some TAB person doesn’t get to tell me what, when, and how to eat. I don’t need “life skills classes” to teach me how to treat other people, how to answer the phone, how to keep myself from looking like I just rolled out of bed and hit the streets every day. But…well, sometimes I felt lost.

What do you do when your brother and sister-in-law bring over your baby niece, and you know deep in your heart, they’d never leave you alone with her? (You accept, but your heart breaks a little, even though you know it’ll be easier when she’s bigger).

What do you do when a client at work becomes borderline abusive, but you fear quitting because, well, what if you can’t get another job? (You stay, or you go back to unemployment and “job services.”)

What do you do when you land the job interview and wonder, “Do I disclose or not? How much of my CP, my autism, my whatever, do I reveal or let show?” (You ask advice, but then wonder if you should take it).

What do you do when that cute guy at church, the community center, your book club, asks you on a date, but you hesitate because well, a lot of PWDs in relationships face abuse? (Oh, boy…)

What do you do when the animal shelter turns down your adoption application? (You fight, but you might lose. So sometimes, because you’re afraid to lose–again–you walk away).

What do you do when lack of transportation keeps you from doing what you want and going where you want, for the 200th time? (You stay home and fight discouragement).

What do you do when you want your favorite meal, but no one’s home to help you cook it, and when they are home, they’re too tired or busy from their work, their extracurricular activities, their problems, to help? (You eat what they make).

What do you do when everybody is too busy with their problems to hear you? (You shut up).

What do you do when you have a dream, but because you know your limitations so well, you don’t step out in faith for fear of failure?

What do you do?

I’m still figuring it out, as I’m sure every PWD is to some degree. There is no IEP, no anything-P, for this. There’s no formula, no set of goals, no measuring stick. Are there solutions? Sure, sometimes. That’s why a ton of disability services exist–but they’re often geared toward only a certain subset of disabilities or groups of PWDs (often the most severe, but that’s a separate issue). But often, clear-cut answers don’t exist. It’s nobody’s fault; it’s just life.

But does that have to be life for PWDs? I know I’ve asked this question millions of times, but it never leaves my head, and I won’t stop asking until I, until we all, get answers.

I realize we can’t teach “life.” There’s absolutely no way to know, 100%, how to do some things until you just do them. (Hat tip to Nike). But the question on my mind is, even if we can’t teach, can we do a better job of preparing and encouraging? For instance–yes, we can teach self-advocacy. But I think in doing so, we should say, “Sometimes self-advocacy will only take you partway. Here are some options for when you get pushback.” Yes, we can teach diaper-changing, bottle-warming, the safe way to hold a baby, etc. But in doing so, we should also say, “You have the potential to reproduce and raise a family–if you want to, with the right people. Here are some ways to know who’s right and who’s not. Here are some modifications you might use.” (For example, I sometimes hold my niece with a pillow under the arm that isn’t supporting her. That keeps her from falling off my lap).

You remember the Lost Boys from Peter Pan? Yeah–well, as an adult with a disability, I often feel like a Lost Girl. I can function, but that doesn’t mean I know how to navigate every situation. After living like this for years, I know there must be more Lost Girls and Boys out there–except they grew up. They’re Lost Men and Lost Women.

Hear us, temporarily able-bodied world. The IEPs, the other Ps, the safety of Disability Land–for many of us, it’s gone. Find us. Listen, and help us navigate. And if you are one of those men and women: don’t give up. You deserve to be found. You deserve to know what to do. I for one won’t stop looking until I find answers for myself, and for you.

 

Please Cancel My Subscription to Your Issues: Not Everything is a Disability Issue

I was diagnosed with cerebral palsy at age two. A year or so later, I had been in preschool for a while and the teachers had noticed behavior they felt was unusual. I fixated on certain things, like the story of Cinderella. I sing-songed answers when asked questions or spoken to. I could communicate well, but not always the way people expected or wanted. After observing these and other behaviors, someone recommended my parents have me tested for classical autism.

It turns out I did not have classical autism, although the testing experts did tell my parents about communication differences they felt I might have. Mostly though, they said what I was doing could be chalked up to a little kid being a little kid. Looking back now, my mother says, “Naturally though, they thought [these behaviors] were disability-related” because I already carried a CP diagnosis.

And that makes me think. Once a child is diagnosed with a disability, why does everything suddenly become a disability issue? Your five-year-old who happens to have CP says “seed” and “runned” instead of “saw” and “ran?” DISABILITY ISSUE! Your twelve-year-old with a spina bifida diagnosis tells you her head and stomach hurt? DISABILITY ISSUE! Your sixteen-year-old with ADHD is ticked off because a coworker treats him like a three-year-old? You get it. But, is it always a disability issue, and does it have to be?

Advocate Kathie Snow talks about this in her excellent article “Disability Issue or Human Being Issue?” In it, she mostly addresses the concept of “compliance,” and how PWDs are expected to comply without question all the time, even when they shouldn’t. Kathie rightly points out that when a TAB person protests something, says “no,” gets angry, whatever, it’s because they’re human. But when a PWD does the same thing, it’s considered noncompliance and directly tied to disability. Hypocritical much?

I wholeheartedly agree that we need to stop focusing on disability issues and start saying, “When is this a human being issue?” But I’d like to piggyback off Kathie and point out, this goes way beyond behavioral compliance. For instance, when your twelve-year-old with spina bifida says, “I don’t want to go to therapy. I have a stomachache,” don’t assume she’s making something up because she’s disabled and wants to get out of doing work. Don’t assume that stomachache has to do only with her muscles and existing medical issues. She might be entering menarche and having cramps. She might have eaten something her body didn’t like. Heck, she might have appendicitis.

In the same vein, don’t assume that natural developmental progress is always tied to disability. I’m not a doctor or child psychologist, but as far as I know, it’s not unusual for a five-year-old to mix up tenses. That often has nothing to do with a disability diagnosis. Now, if the kid gets to about seven or eight and is still doing it, there’s a problem. But again, that might not be tied to the original disability diagnosis, nor does it mean he or she needs yet another diagnosis.

So, When is it a Disability Issue–or Not?

I will admit, this one’s tricky. Sometimes it’s better to go ahead and get the testing, ask the doctor or therapist, whatever you need to do, because it’s hard to tell. That was the case for my parents and preschool teachers because what I described can be symptoms of classical autism. They aren’t always, but sometimes it’s difficult to gauge what’s typical vs. what will lead to a disability diagnosis. So, one thing to keep in mind is: if your child doesn’t have a diagnosis, but is exhibiting enough symptoms that you think one could exist, go ahead and ask. Seek help. Do your research. If your child isn’t diagnosed, great. If he or she is, still great. Your kid didn’t change–now you simply know he or she will need extra help to reach the best quality of life.

But let’s say your kid, or teen, or adult child, already has a diagnosis. When do you know something is or isn’t a disability issue? Well again, the answers will vary. Disabilities are extremely situational. They are, shall we say, capricious creatures. But there are a few things I think you can watch for and ask yourself when determining the answer.

-Ask yourself: “What’s going on around my child?” When your eleven-year-old son, who is deaf, came home with a bloody nose, did he tell you some jerk kid was mocking his voice or sign language? Does his school have a known bullying problem? Are students with disabilities seen as more alike, or different? Does your child’s teacher report he has many friends? Often the environment is a much bigger problem than the disability. If you don’t know the environment, ask to observe; if you get pushback, go to the principal, the head coach, the superintendent, wherever you need to go, to get answers.

-Ask yourself, “If my child didn’t have a disability, how would I react to this?” Your eight-year-old daughter comes home with a C on a math test. She’s been diagnosed with dyslexia, so a part of you panics–does she have dyscalculia, too? But up to now, she hasn’t shown recognizable symptoms. Her teacher hasn’t said anything negative about her grades. In this case, react as you would if she wasn’t diagnosed. Say, “Did you do your best? How can I help you do better? Would you like the two of us to talk to your teacher together?”

-Ask yourself, “Is my child basically on par with other kids their age?” Again, sometimes hard to tell if you’re not trained in that kind of thing. And sometimes, your pediatrician will say, “There’s nothing to worry about” when there actually is. Sometimes you have to listen to your gut. If the doc has assured you your child will catch up, but it’s been months or years and that’s not happening, your parental alarm should be dinging.

But remember, the doc is right when he or she says kids develop at different rates. Again, this often comes down to observation. Your two-year-old might speak less than the others at playgroup, but is he still talking? Could she be quiet because the other kids are loud, and not letting her get a word in edgewise? Your middle-schooler might struggle socially, but is that only because of an autism diagnosis? Maybe not. It could be because his friend group is evolving, and he’s trying to figure out where he fits in. It could be because her friends are showing an interest in boys, but she doesn’t feel ready for that. (I myself had dreams of romance as a middle-schooler, but they were confined to books. Most boys my age acted like they still thought girls had cooties).

-Is the issue at hand coming up only in a disability context? That is, does your kindergartner, diagnosed with CP, only have trouble gripping and holding objects of certain sizes? Does your visually impaired second grader struggle to see or write only certain letters and numbers? Does your high-schooler only report headaches on days she is expected to go to “job sites?” (And on that last one: if yes, then it might be time to rethink the whole “job site” thing).

-How does this issue affect everyday life for you and your child? If your four-year-old is fixated on Cinderella, she’s probably being a little girl. If, with age-appropriate prompting she can talk about something else, she’s probably fine. But if she always brings the conversation back to Cinderella, she’s losing friends over it, or she’s not developing other interests–red flag. If your child with ADHD lashes out because a coworker is making fun of him, that’s one thing. But if the aggression turns violent, or if it happens with other people who haven’t said anything to him, it might be ADHD-related.

-Does it make sense to solve this issue in a “traditional disability world” way? This often comes up with undiagnosed kids but can with diagnosed ones, too. In other words, yes, your child uses a wheelchair, and is having trouble in PE. But her problems may not be wheelchair-related, and if they are, the solution is probably not to exempt her or have her do age-inappropriate PE tasks. After all, you wouldn’t want or expect that for a TAB child, or for yourself. Or yes, your child’s English grades have slipped lately. Should he be placed in special ed, as a PWD might automatically be? No, probably not. It’s probably time for a parent-teacher conference, and time to think about what your child needs from English class that he’s not getting.

In conclusion yes, there are disability issues out there. It comes with the territory, but assuming everything a PWD needs is tied to their diagnosis is dangerous. It pigeonholes them and keeps you, as well as everyone else, from learning. So let’s cancel our subscription to “disability issues” and start saying, “Even if this is disability-related, it is first and foremost a *person* issue. And as people ourselves, we can help solve it.”