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.”

Blog Quickie: (Don’t) Gimme that Old-Time Religion

Hello readers,

Welcome to my first Blog Quickie, so named because it will be considerably shorter than most. A blog quickie is what happens when:
(1. I have a topic that fits into the blog but covers new stuff along with old stuff, so I don’t want to belabor it
(2. It’s been over 7 days and I want to “whet your appetite,” so to speak. Yes, there are more July posts coming.

I’m currently reading a book from one of my all-time favorite Bible study writers and speakers. Over the years I’ve done multiple studies of hers. She has continually uplifted and challenged me, enough that I buy her non-study material as well. The book I’m currently reading is no exception, but one little thing early on in it gave me the idea for this post.

The book is entitled Get Out of That Pit, and is aimed toward Christians who are living in “pits”–situations where they feel stuck, unable to commune with God or stand against Satan, and unable to see beyond their troubles. Some pits, the author (Beth Moore) says, are pits of sin. That is, if you willfully steal money or cheat your company, with full knowledge and desire to do so, you are in a pit of sin. In that case, you jumped in, although you can also slip into pits of sin. That’s what happens when, say, you never meant to get involved in an affair, but what started as flirting got out of control. It’s what happens when you took the pain meds for their intended purpose because your quality of life was nil–and next thing, you woke up addicted to them.

What gave me the idea for this post though, is what Beth calls “a pit of innocence,” or getting thrown in. You didn’t sin to get into this kind. You didn’t ask for it. Something or somebody just threw you into a bad situation and, like Joseph’s brothers in Genesis, walked away or sat down to eat their PB&J or quinoa and vitamin water right in front of you.

Beth gave several examples of pits of innocence, such as:

-Your spouse continually abuses you or abandons you

-You get molested or gang raped

-Your house burns to the ground during the few months you didn’t have insurance

-You’re falsely accused, of a crime or something else, and have to pay for it

-Your best friend stabs you in the back

-A family member perpetuates years of abuse, manipulation, or crime onto you and your spouse, children, etc.

-You lose a loved one, for any reason, especially a child, a young spouse, or someone else you didn’t think would die for years

–You birth a severely handicapped child

Yup, that’s the one. That bold type is there for a reason.

Okay, I get it. Having a disability, or birthing/adopting a child with one, is not a rosy situation. Sometimes it’s, well, the pits. I myself am working through whether my disability has become a “pit of innocence,” because sometimes the hand of God *allows* a pit even if He didn’t throw you in (which by the way, He doesn’t. God does not throw away His creations). But I have a real problem with the idea that the existence and raising of that child is a pit, or what another author, Wendy Pope, calls a Personally Intense Trial (PIT). The implications are pretty negative, so I’m not going back over them.

Unfortunately, I’ve noticed this mindset tends to permeate Christianity, and especially certain denominations I won’t name. Beth alludes to it again when she refers to a friend’s offspring as “desperately handicapped.” Christians on Facebook allude to it when they post pictures of people with obvious disabilities, with captions that say, “This person couldn’t get one like or amen–please share!” They do it when they post pictures of a mother cradling two young children with obvious disabilities–a picture with a caption lauding the mother as a hero.

I have heard fellow Christians–and, it being the South, many non-Christians in my region–say “bless their hearts” when speaking of, or even straight to, PWDs. Classic Christian hymns, poems, and other writings refer to PWDs as “lame,” “simple,” “crippled,” and “poor” (probably because back then, they were almost guaranteed lives of poverty–not that that’s changed much).

Now, do those writers mean to do that? Do Beth Moore, Wendy Pope, Greg Laurie, TD Jakes, whoever, mean any harm? No. I’d say the same thing about writers from other religions who said or wrote this kind of stuff. But in this case I have to say, “Please don’t give me anymore old time religion.” Not in the sense of fundamental truths about God, Jesus, the Virgin Mary, any of that. No. That’s fine. That’s great. Some traditions deserve to stand–need to stand.

But I don’t want anymore of this “poor, pitiful them” doctrine. I don’t want any other statements, writings, sermons, etc., that paint PWDs as poor and desperate, no matter how severe their disabilities are. Again, I GET IT. I really do. If the child you now hold in your arms will never say, “I love you,” will never recognize your face, will never whatever–that is a trial. That is an occasion to cry out to God. But the person him or herself is not a trial, and “old time” doctrines about disability say otherwise.

We need a new theology of disability. We need a theology that says, while the disability itself is the pits at times, people are not personified pits. We need a theology that says PWDs are strong, worthy, loved, needed, and gifted. We need to hear that PWDs are givers and providers, not just takers and consumers. We need to hear, “Living ingeniously” or “Succeeding his/her own way” not, “Desperately handicapped.” Let’s replace “bless their hearts” with, “Blessed be the name of the Lord for bringing them here.”

Selah.

Blog Bonus: Disability and Dystopian Fiction

Ding-ding-ding! Welcome to the bonus round!

I’m not a big dystopian fiction reader. I read The Giver by Lois Lowry in middle school and enjoyed it (well, except for that one scene with the little twin baby. I just about cried in class). I’ve read Rachelle Dekker’s The Choosing, which is sort of dystopia with a twist. And of course, I can’t ignore that dystopian fiction is huge among all audiences, but especially teens, young adults, and adults. Divergent. The Hunger Games. The entire Giver series (yeah, apparently it’s a series, who knew)? It’s everywhere.

As I said, I’m not too into the genre, because a lot of it feels and looks the same to me. The premises are engaging, but…well. That is, until I really paid attention to a certain YouTube ad. The ad is actually a trailer for a movie only available on YouTube Red, called The Thinning.

At first I was unsure why The Thinning intrigued me when similar offerings make me say, “Ho-hum, another one.” I thought it was because unlike in other offerings, intellectualism counts in the world of this movie. The year is 2039. The planet’s resources are completely drained, so the world must control population. In the United States, specifically Texas, the way to do this is through a single yearly standardized test. The test is given to first- through twelfth-graders. Those who pass, live. Those who don’t, are euthanized.

Being a brainy girl, I thought, okay. I can definitely relate to the pressure to keep up your brainpower. I’ve always hated standardized testing, so I like the fact that The Thinning is basically saying “Suck it” to that whole system. I might even pass the Thinning test were this real…and then I got really creeped out. (It didn’t help to watch a free clip where they show students getting the test results. Creepiest thing I’ve seen all week. I mean, a first-grade teacher even plays “My Country ‘Tis of Thee” to keep failing students calm as they are taken).

See, here’s the thing. I’m smart. I’ll be the first to admit it not because I want to show off but because I love using my brain. I was always picked first for spelling bees in school, and was the only freshman on a Quiz Bowl team of seniors and juniors. (The only girl too, so, go feminism). But, my visual and perceptual difficulties, tied to CP, gave me nightmarish problems with math. I have failed state math tests and had to take remediation to pass them. Math nearly kept me from getting a deserved scholarly distinction and could have kept me from earning a diploma. In other words, if the Thinning test contained math? Um, high possibility of dead woman walking.

And then I thought, what is up with that? Because in that scenario, the only reason I would fail would be because of a disability. Which then led me to this thought process:
-If I might have failed because of my difficulties, would students with intellectual disabilities automatically be “thinned?” (I’m using that term because I don’t want to write the E word again).
-Actually, persons with disabilities of any kind, including the elderly, are seldom mentioned in this or any other example of dystopian fiction. If they are mentioned, they’re usually the ones who get “thinned,” “released,” whatever euphemism you wanna use.
-What the heck is up with that? One, isn’t it just perpetuating the idea that PWDs are of lesser value and may in fact be better off dead? And two, why don’t characters with disabilities ever get a real chance to shine in dystopian fiction? (In any fiction really, but considering how huge the genre is…)

In brief answer to this: Yes. I do believe dystopian fiction, as it now exists, perpetuates the idea that disability = less. PWD = of lesser value (and that includes your elderly people, your severely injured veterans, etc.) I didn’t write this post to say, “Stop writing dystopian fiction, you bunch of ableist buttholes!” No. It’s a free country. Write what you want. In a world that so often doesn’t learn from its mistakes, I’d argue we need dystopian fiction to show us where we’re headed if we don’t shape up in a lot of ways. (Make of that, politically, religiously, and morally what you will; I just mean it in a general sense). But I do think that when it comes to PWDs, dystopian fiction is doing more harm than good.

I can hear some of you now: “The Thinning and those other examples aren’t real, so get over it.” Okay, I hear you. But I’m not going to “get over it” if what you mean is, don’t think about what dystopian fiction is saying. I just realized: part of the reason I don’t read it or watch it is because I know, in those environments, I would never have a chance. I’d never really be anyone. And, since the current world is so tough anyway, why do I want more of that? Why do I want a worse version of that? And what would happen if authors, directors–all those creative types who I so respect because we’re in the same line of work–tried to turn that around?

I mean, think about it. What would happen if we stopped saying disability is keeping us from living in a utopia? What if we actually privileged disability in some way? What if a PWD was actually a dystopian hero or heroine? I guess if you wanted to go really traditional, you could make him or her an escapee from the fate of death. But if you wanted to turn the genre on its head, how about:

-A PWD hero who lives in a world where disability is normal and able-bodied is freaky–working to save TAB people, including someone who bullied or tried to kill them?

-A world where only characters with disabilities exist, and a hierarchy is put in place based on that. You could even do a reverse hierarchy, where the most severely affected are the upper class, not the lower class, and the least affected are the lower class because they’re “too close” to TAB.

Or how about this one: A dystopian world that doesn’t turn on disability’s fulcrum, but where persons with disabilities actually get an equal shot to live? Where they take the lead in the missions and plot the schemes? Where they have the brains and brawn? Where–oh, wouldn’t this be different–someone with a disability might be a villain?

The possibilities are endless. To my fellow creatives, I say, you’ve got an imagination. Use it. Take characters with disabilities off fictional death row–because we’re in the fictional world just like the real one. When that world gets in trouble, we wanna kick some butt!