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.

 

Advertisements

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.