You are entering the Independence Zone!

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.”

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.

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!

Happy July 5, readers!

I hope everyone had a marvelous Independence Day. Myself, that day has always been kind of a hard day for me, for many reasons. I find fireworks too loud and invasive (when you have no depth perception or peripheral vision, they always look like they’re invading your personal space). I don’t do heat and bugs, and many of the activities people do on Independence Day are pretty physical. Basically, I want to get in a time machine and tell the Founding Fathers, “Dudes, you couldn’t have declared your freedom in January? October? Even April, for crying out loud.” But, as important as I know independence is, I’ll go with it.

As you might anticipate, Independence Day also makes me think of independence for people with disabilities–or the lack thereof, in many cases. It makes me think about what I do as an advocate. And that brings me to today’s post, a question that occurred to me a little while ago. I think it’s time to face, and try to answer, whether advocates have savior complexes.

I began asking myself this question several months ago after seeing an article written about the film The Zookeeper’s Wife. If you haven’t seen the movie or read the book, it’s about a German couple who use their zoo as a way to protect and save Jewish people from the Nazis during World War II. It’s a great story, but the article I read gave me a new perspective on it. The writer claimed stories like The Zookeeper’s Wife consistently put Gentiles in a savior role, while making Jews look and feel like pathetic, helpless victims. The author claimed such stories tend to appropriate the Jewish experience, or tell only the parts of it that would benefit the Gentiles, the “heroes.” The fact that the Jewish people of the 1940s were heroes in themselves is hardly ever mentioned in these stories, the author claimed.

Now, this author wasn’t Jewish, so I knew the beef wasn’t personal. I also questioned how seriously the article’s claims should be taken. The writers of TZW and stories like it were, I felt, not trying to discount anyone or make them feel like victims. In my experience, such stories usually celebrate the triumph of the human spirit, Jew, Gentile, or otherwise. There was a part of me that said, “Great, more political correctness gone mad.” But then I put myself in the author’s shoes and thought, “She may have a point–and a big one at that.”

Let’s replace “Jewish” with “disability” for a minute. In fact, for a minute, let’s use the word the world tends to use. Let’s replace “Jewish” with “disabled.” If the people being saved or protected in a story like TZW had disabilities–were visibly different–would the story change? Would temporarily able-bodied people look more like Superman and Wonder Woman?

We know the answer: yes. We know that answer because we see it all over the media. The child who stands up to a kid bullying his friend with a lisp, stutter, or brace on the playground is always the hero of the after school cartoon. The man in a wheelchair who makes a brilliant presentation at work is only able to do so after people have cast aspersions on his abilities–and after a TAB coworker gives him a pep talk. The police officers who find the autistic child who wandered into the woods are (rightly) held up as heroes, but no one ever credits the autistic individual for surviving, remembering certain skills, or knowing what to do. The media definitely has a savior complex when it comes to PWDs because we are so often portrayed as helpless. But are advocates, who want to change that, part of the problem, too?

It’s a thorny question. It’s one I wrestle with a lot. I don’t want to be anybody’s savior. I don’t want people to call me a hero for saying what common sense should dictate about a fellow group of human beings. But if we as advocates aren’t careful, the savior complex can slip into what we do and say. To avoid that, here are a few tips.

-Make sure the person you’re speaking up for really wants the help. In other words, never assume that because a PWD is standing on a full bus, it’s because people refused to give up their seats. Don’t start yelling at or shaming TAB people when you see a blind person navigating a crosswalk alone. It’s a lot more productive to say, “Would you like my seat” or “Excuse me, would you like help?”

-Give PWDs in your life the opportunities to do real things. The reason PWDs are so often painted as needing to be “saved,” is because they aren’t given the opportunities to save themselves, achieve what they want to achieve, etc. The “classic” portrayal of a PWD–someone who stares at the floor, slumps to avoid being seen, and is only spoken to/about in terms of disability–is a victim. That portrayal says to the TAB world, “If you don’t help them, who will?” (Which, what is up with that–we are not the stars of an ASPCA infomercial)! A PWD who goes to school, hangs out with friends, joins clubs, pranks coworkers, and buys a date a drink–that person may need someone to stick up for them now and again. But in general, that person is just as able to rescue or protect as anyone else.

-Be careful how you speak. In other words, yes, we should talk about the flaws of the medical model of disability. We should talk about the flawed logic in constant separation and segregation. We should expose the truth behind group homes, sheltered workshops, and the like. But we have to be careful how we couch it. I remind myself of this a lot, because it’s easy for me to get angry at the injustice of these things and therefore, think all doctors, all group homes, etc. are bad. As much as possible, resist the urge. For example, don’t blame doctors for doing their jobs the best they can. If they really have crossed the line, such as in telling you your baby with Down Syndrome should automatically be institutionalized, call them out. But don’t paint the whole group as evil. Same goes for group home administrators, special ed teachers, etc. I *know* how hard this can be, but it is worth it.

-Rein it in. As tempting as it can be to get on a soapbox, wait until the conversation actually lends itself to an advocacy discussion. Again, I have to do this a lot, especially around certain people (teachers, college students studying therapy or special ed, and so forth). If we talk about PWDs outside advocacy, we will teach the rest of the world they are more than the latest marginalized group.

-Give yourself a break. If you’re an advocate who also has a disability, like me, you may find advocacy harder because hey, it’s your whole life. You don’t know what it’s like not to have to stand up for yourself, or have others stand for you. It can get exhausting, and take that from someone who knows. As much as you need to, take a break. Say, “I’m not going to think about my (X disability) today. I’m just going to have fun/be me/do what I need to do.” If the environment makes that difficult, reach out for help, or leave the environment when you can. If you need to, say no. Example: When I get invited to fireworks displays I now say, “Thanks very much, but they aren’t my thing.” That gives me the freedom to curl up with a book, be quiet, and indulge my right not to think about how disability affects my Independence Day experience.

It is our right to advocate, and PWDs do need that. They welcome it in many cases. Yet it’s often easier and more productive to let us advocate for ourselves. Let’s all advocate together, the right way, so we can all experience independence and heroism.

Since you guys were so patient with my dry spell all June, I think it’s high time you got a bonus round. I decided to resurrect Dear Church. If you don’t remember, the original Dear Church was a post I wrote to the Christian church in general, pleading with them to stop saying and doing certain things about/to people with disabilities, and start doing more productive things. And since the Christian church has simultaneously done more to improve and damage the face of disability, I think we need another round. Here we go.

Dear Church,

1. Stop asking me to celebrate segregation. Many churches act excited when they get a “special needs” Sunday school class. Today, members of my church clapped and cheered upon hearing the pastor commend them for partnering with local job services. They were partnering to put on a prom for teens and adults with “special needs.” While I’m sure intentions were good, please don’t expect me to celebrate. I can’t. I won’t. It goes against every fiber of my being. Look for ways to integrate instead. Remember, Jesus was probably the biggest integrator ever to walk the planet.

2. Define “independence.” My church and others have an interesting understanding of this word. They rightly preach against independence from God–the attitude that says, “I am completely self-made. I do not need God. I can save myself.” And that’s fine–amen! Keep preaching! In our arrogant society, people need to hear it. But at the same time, be aware that some of your congregants are crying out for the chance at the kind of independence everybody takes for granted. They’re aching for the chance to stand up for themselves and make their own choices. You don’t have to say it every time. But please, delineate more clearly between the prideful attitude of the self-made person, and the human need to operate with at least some autonomy. While the Bible extols community, it doesn’t call independence sinful. Which brings me to…

3. Improve PWDs’ places in the community. So often, we are lumped in with little children and the elderly, as people who need the congregation’s care. And sometimes we do. But most of us suffer from a lack of opportunity to care for others, to do real things. We fight for places in our communities outside the church. If the church widens its understanding of what we can do, maybe that fight won’t be so hard.

4. Listen to our whole stories. Yes, disability is a big part of who I am. It has informed much of my experience, spiritual and otherwise. And yes, it’s a huge part of my testimony because God and I work through it together every single day. I am honored to share that with you and I’m sure other PWDs are, too. At the same time, we want to share parts of our testimony that may not be disability-related. For example, if I went on a mission trip to Romania to care for orphans, I’d be bursting to tell that story. I’d want to brag on God. I wouldn’t necessarily want the focus to be what I overcame to get there. And that goes for college, marriage, anything.

5. Talk about something other than my disability at coffee hour. Pretty self-explanatory, but bears repeating since church is often a place to share honestly about what’s going well or not in our lives. We unload our burdens there, as we should. Thank you for helping me carry it. Remember though, that sometimes I need a break (more on that in a later post).

6. Let us lead. Yes, PWDs can teach. We can facilitate Bible studies, coach church league teams, plan a retreat, etc. However, I’ve rarely seen a PWD in a leadership position. By letting your members with disabilities lead, you set the ultimate example of inclusion. You also send the message that like anyone else, PWDs can be divinely chosen to influence others on a large scale.

7. Ask us. Ask, “What do you need/do you need help”–yes, absolutely. But after that, ask, “Have you signed up for X yet? If you want to but have hesitated, what could we do to make it easier? Is there another activity you’d prefer?” Which brings me to…

8. Think outside the ministry box. A lot of congregations focus on a few key ministries, like sports or prayer walking. Those are great! The problem is, they often leave little room for alternatives. Personal example: I have always wanted to be on a church drama team, or get a Bible trivia team going for the older Sunday school kids. And I have had opportunities to do things like that, which I relished. But they weren’t consistent because not enough other people were interested. Pastors, leaders, don’t use that as an excuse. Don’t leave it there. Ask, “How can we generate interest? How can we accommodate X disability? How can we change what we’re doing in X ministry so it’s more inclusive?” Partner with other churches if you can; it gives everybody a chance to meet new people. In some cases, it may break down barriers (if a Catholic and Protestant church partner, for instance, some myths about both could be dispelled).

9. Talk openly about Jesus’ relationships with PWDs and what He has to say to us and for us. Now, the Bible never specifically mentions the words “autism,” “FASD,” or what have you. They didn’t have those terms and frames of reference back then. That’s fine, but here’s the thing. The church usually only talks about Jesus and disability in the context of His healing abilities. As with above: yes, you can start there. But don’t stop there. If a congregant asks you, “What would Jesus do/say about this,” do your best to give feedback. Ask yourself, “What would Jesus see if He moved among the PWDs of our world? What does He want our theology of disability to be?” There are some excellent books on this subject, by the way.

10. Pray and evangelize WITH us. Sometimes the church puts a big burden on PWDs to pray or tell the unchurched about Jesus, because we’re seen as inspirations to whom no one, not even God, would ever say no. First off, that’s totally false. And second, that’s too big a burden to carry. Yes, some of us, yours truly included, are what have been called “prayer warriors.” Some of us are gifted Gospel presenters. But no one person can take on all the responsibility for these tasks. Remember what Paul said about “one body, many parts.” Be our partners–not our helpers, but our ministry partners.

11. Teach us how to find and use our spiritual gifts. A lot of PWDs struggle with this, or think they are exempt from spiritual gifts. False again–if you are a believer in Christ, you have at least one spiritual gift. Church leaders, help your congregants with disabilities find and use theirs. If opportunities are limited, see #8.

12. Invite us and attract us. Our churches are hurting for diversity, not only in terms of disability but in terms of all kinds of backgrounds. The more vibrant, active PWDs we see in a congregation, the more eager we are to join in. Look around. How many members with disabilities do you actually have? Are the disabilities all the same? Who is being served, and who’s not (for instance, a high-functioning individual may feel unserved if all the other PWDs at church are cognitively affected. A young PWD isn’t gonna want to hang out with the old folks all the time). Treat disability as diversity, and go looking for believers with disabilities. Say, “Welcome! Come get to know God with us–and with many different people.” You’ll love the results, I promise.

Selah.

Hello readers,

Yes, it has been a while. Sometimes that happens when I run out of ideas or, as happened this time, when I’m just working through a spell of the blues. I try to ignore those, but let’s be real here. I live daily with crippling isolation and self-doubt. People who don’t know me assume I would be fine if I just took whatever random job is available, moved somewhere and took public transit, or “tried” a day program. I’m only allowed to save money and work under certain conditions, and modifications/accommodations are only available under certain conditions. It is enough to make you scream. As I’ve said during prayers, “God, I’d jump off a roof, but I can’t even get to a roof. And you know what? That’s not funny!”

But enough about that. Venting might be okay for a minute but it doesn’t get anything done, and I’ve missed my blog. More importantly, if I’m going through something like this, I’m sure thousands of other PWDs, maybe millions, are or have, too. I think today is a great day to do a review on basic human rights–which are disability rights, too.

These days, we hear a lot about disability rights. Well, maybe not a lot, which is its own issue, but more than we did a couple decades ago. We hear phrases like “all means all” promoting inclusive education around the world (way to go Australia, for recently standing up against a Federal Senator with a plan to “get rid of” the autistic students in your schools). We know about ADA, IDEA, IEPs, 504s, transition services, you name it. But really, in the day to day grind, what does the bill of disability rights actually look like? Here’s a wake-up call:

The Bill of Disability Rights as it Should Read:

  1. You have the right to a safe, clean, and loving environment.
  2. You have the right to an appropriate education.
  3. You have the right to apply for, interview for, and obtain the jobs you want. Within the workforce, you have the right to work for, apply for, and gain seniority and privileges.
  4. You have the right to hope for, expect, and build a relationship with a partner. You have the right to procreate and raise a family.
  5. You have the right to leisure opportunities of your choice.
  6. You have the right to accommodations and services as needed, when and where needed.
  7. You have the right to live without discrimination and bigotry.
  8. You have the right to be as inspirational and amazing as you want–or sit on your couch and eat Cheetos on a Saturday morning. You have the right to live your life without apology.
  9. You have the right to worship any deity you want, with or without the context of hope for healing, a cure, or a reincarnated life free from disability.
  10. You have the right to take on responsibilities, make decisions, change your mind, seek new opportunities, express emotions, and live life on your own terms.
  11. You have the right to protect yourself physically, mentally, emotionally, and spiritually. You have the right to privacy. Your body, mind, and soul belong first and foremost to you (or the deity of your choice, but hopefully that deity is also a proponent of protection as outlined above).
  12. You have the right to ask questions like “why,” “how,” and “what if.” You have the right to speak up for yourself and others, and discuss your experience. Just because you are more or less “disabled” than somebody else does not mean you don’t understand the “reality” of your own disability.

Now, you might think the reverse of this–disability rights as they exist in reality–is the exact opposite. As in, “You don’t have the right to an education because you can’t learn” or “You only have the right to an education if we say you can have it.” You might think the opposite is, “You have the right to procreate in theory but can’t really do it so we won’t talk about it.” Sometimes that’s true, but oftentimes, it’s a lot more complicated than that. And the more complicated basic human rights get, the more PWDs have to fight for them. It’s no wonder they get the blues. (At some point I may do a post about the depression and suicide rates of PWDs, but frankly, that topic is too emotional for me right now).

The truth is, the current bill of disability rights comes with lists of provisos longer than my arm. As in, you have the right to a safe, clean, loving environment, BECAUSE that’s all anybody should expect, and because that’s the easiest thing to provide. No matter how less-than-ideal that environment is, as long as you are cared for, clean, and not bleeding, you’re fine. Or how about, you have the right to apply for and get the jobs you want–if those jobs actually exist in your area, if a job coach can convince someone to consider you, and if those jobs actually work out for more than a few weeks or months? How about, you have the right to build relationships as long as there are people willing to go out of their way and be your “buddy” or “helper” first? THEN maybe you might work up to friendships and partnerships.

It’s just too much. We would never, ever do this to other human beings. They are afforded the rights we’ve talked about simply by being alive. If they’re not–if their countries are oppressive, for instance, or they’ve been abused–then the rest of the world becomes outraged. They step in for the people being denied basic rights and try to stop it. But when it comes to PWDs? Even and especially in the U.S., we say stuff like, “We’re doing the best we can; we just don’t have what you need; we can’t help you because your situation doesn’t fit the box.” Seriously, folks–if you’re not outraged, you’re not paying attention.

So to close out this little review, I’ve got some basic questions for you (see #12).

  1. Can I–can we–just get some basic human rights?
  2. Why are we casually disenfranchising our fellow humans?
  3. What is it going to take to change it? I’m one person, and one person can do a lot. But at some point 1 needs to become 25, then 50, then 100, then 1000, until somebody listens. Quite frankly, I’m a little worn out.
  4. How can we help our society see that whether or not it means to be, it’s still very much an ableist one? How will ableism end if we don’t call it what it is (more about this in a future post).

Let’s stop listing provisos and trying to make PWDs and their needs and wants fit perfectly into our molds. I’ve tried to do it to myself and I’ve watched other people do it. What tends to happen is a lot of squeezing, stretching, forcing, and groaning–and in the end something implodes or explodes. It can get pretty messy out there. We’ve acknowledged the mess, so let’s keep cleaning house.

Happy June, readers!

I hope everyone had a great Memorial Day, and took time to remember and appreciate fallen veterans as they kicked off summer with family and friends. Your kids and teens might still be in school, but summer vacation will be here in a blink. New activities will fill your schedules, and that’s great. But for people with disabilities and their families, many of those activities will likely be segregated–that is, “for the disabled only.”

Now, you all know how I feel about segregation based on disability. We’ve talked about it. But one thing we haven’t discussed, is one that occurred to me recently. Disability is the only difference that makes segregation okay. Most people don’t even call it “segregation” or “separation.” They assume that because disability = limitations, separation, segregation, and seclusion are sensible and even benevolent solutions. Yet, if the same rules applied to people of other differences and diversities, it would be called “segregation.” Advocacy groups would shriek nonstop until the segregation stopped. Once again, the double standard is mind-boggling.

I got the idea for this post after seeing a national news report about a school where students campaigned to hold a Muslims-only prom. To wit, this prom was meant only for female Muslim attendees. These students’ branch of Islam does not permit unchaperoned interaction with the opposite sex, so the girls felt they’d be left out of the prom unless they had one just for them. A lot of people commented on the story, saying the idea was ridiculous. And I have to say, I agree.

It’s not that a rationale doesn’t exist; one does. These girls are from a different culture and different religion than the majority, and some of them may feel uncomfortable attending a traditional prom. What I have a problem with, is effectively segregating these girls because of their culture and religion. In this case, are they choosing segregation? To a point, yes. But in allowing the girls to do so, the school is saying, “We would rather keep one group entirely separate than teach them, and others, how to function together. We would rather hold a prom that defeats the entire purpose of a prom, than provide alternatives, such as culturally sensitive chaperoning.” And a lot of people, non-Muslims and Muslims alike, see that message as harmful, perhaps malevolent.

Now, I am not a Muslim and I’m not from an ultra-conservative culture, so maybe I don’t understand all the ins and outs of that example. I’m not trying to be insensitive toward anyone. But I want to use the Muslim only prom example to paint a contrast. I bet you know where I’m going here.

That’s right. Contrast that with “special needs proms.” Schools all over the country hold them, rationalizing that, “Disabled students need a prom, too.” But at the same time, they’re effectively saying, “These students are too disabled, too ‘special,’ to go to prom with any students except ‘their own kind.'” Yet, nobody ever protests. Nobody ever says, “That’s segregation,” or if they do, they’re in the minority. At times, even disability advocates are persuaded to back down from that stance. Teachers, administrators, what have you, use a lot of poor rationalizing to keep the segregation going. You might hear things like, “We do this because these students have behavior issues” or, “We do this because these students have poor social skills.” Every now and then, you hear things like, “Without the special ed prom, these students would not be asked/would not get to participate.” Advocates argue for a while, but in the end, a lot of them shut up and back down. No one else sees this issue the way they do, so they figure, what’s the point?

That last rationale turns my stomach–but then, so do the other and more frequent ones. Segregated dances, proms, camps, trips–they’re all presented as a way for people with disabilities to experience things everyone else gets to experience because they’re alive. But think about it. If the experience is “disabled only,” how real is it? How much authenticity is sacrificed for “issues,” real and imagined? And again–why is this okay for PWDs, but not other groups? Imagine what would happen if teachers, camp directors, etc. said, “This camp is only for black children. White families don’t let them participate in activities with their kids. Besides, “our” kids are more likely to exhibit bad behavior or use Ebonics, which keeps them from socializing properly.”

Please, please, please. Someone tell me I’m not the only one who sees the glaring flaw in that logic.

The major argument I get when presenting my case on this issue is, “But those kids and adults really are different. They need modifications to participate.” Okay. I’ll buy that. I’ve been there. I need modifications to do things, especially in summer when most popular activities are outdoors and physical. But I would be downright miserable stuck on some “outing” or in a “day care program” “for the disabled.” Why? Not because of the people themselves, but because I would feel negatively singled out. The “modifications” argument is not an argument for segregation. If anything, it’s a call for the TAB population to wake up, think about disability, and provide modifications in real, non-segregated settings. It’s an opportunity for PWDs to interact with their peers who don’t have disabilities, and to truly learn skills needed to function in a world where disability is not the majority.

If you still aren’t convinced, or if you’d like to elaborate when talking about this issue, let me wrap up with a few brief bullet points. Segregation of PWDs has been the norm for decades, nay, centuries. It is assumed that PWDs, especially those whose disabilities are severe, cannot benefit without it. But here’s a dose of reality. Here’s what segregation–because that’s what it is–teaches PWDs and their peers without disabilities:

  • Modifications are difficult or impossible to make; it’s not worth it.
  • People with disabilities are fundamentally unlike everyone else. They have no concept of what it’s like to live in a non-disabled world, and even with effort, cannot/will not learn. (This is actually what whites used to say about non-whites. Didn’t fly then, won’t fly now). This rationale, conscious or not, teaches PWDs and temporarily able-bodied people to focus on differences and “special needs,” not what makes them equal.
  • People with disabilities only belong in “disabled” settings. This one is particularly dangerous, because the “disability bubble” does not exist in every situation. I’ve read testimonials of people with disabilities who’ve been segregated in school, at leisure activities, and in the workplace their whole lives. When they do leave those settings, they report feeling lost, unimportant, and incompetent. Children who spend their school careers in segregated classrooms can’t even answer questions like, “What grade are you in?” “Special” students are often lumped together; grades and skill levels do not exist. Therefore, students don’t know where they are, academically and socially speaking. They don’t know what’s expected of them or how their peers act. Therefore, they continue to act as anomalies, which perpetuates the myth that segregation is necessary.
  • People with disabilities are scary/unrelated to anyone or anything in my world. This is perhaps the most harmful thing segregation teaches people who don’t have disabilities. I’ll admit, sometimes it is a little disconcerting to encounter a person with a severe disability, or a person whose disability is extremely obvious. But the reason it’s disconcerting is, those people are almost never seen in a non-disabled setting. If they are, aides, coaches, and caregivers often accompany them. People end up interacting with the caregiver, not the person with the disability. The PWD is assumed to be unable to interact, and the myth goes on.
  • The real world will never work for you. This is a biggie, and the myth that scared me the most growing up. That’s right; even with a mild disability, you don’t escape all the pitfalls of segregation. For a long time, I struggled with the idea that TAB people would never fully understand me or know what I needed. I wasn’t as segregated as some peers, but because segregation existed, I wondered how long it would be before it was considered an option for me. I still struggle at times with the notion that I just don’t belong in this world–and I spent most of my time in the “mainstream.” Think about how a person segregated for most or all their lives must feel.
  • Your differences are bad. Disability is just as much a part of diversity as skin color or religion, sexual or political affiliation, body type or national origin. Yet when we segregate PWDs–and only that group–we effectively say, “Your differences are too different. They aren’t worth celebrating or embracing, and neither are you. Stay over here with the other disabled people, so we can more easily deal with you.” (And that’s another thing, by the way. We’ve fooled ourselves into thinking segregation is for the benefit of PWDs, but at the end of the day, whose life is better for it? Who is actually happy? Right–not the person you segregated).

Yes, there is camaraderie in associating with people inside your group. That’s why I went to summer camp for kids with many types of disabilities as a kid. It’s why I go to conferences specifically for Christian women. It’s why I get together with fellow writers, and why I seek out people with milder disabilities. Occasionally–perhaps often–we need the unique understanding that our tribe, or members of sub-tribes, can give us like no one else can. But there is a major difference between choosing camaraderie, and being forcibly segregated. There is a difference between choosing participation in group-specific settings, and being told, “This is the place/group/activity meant for you. Stay there.”

Segregation hurts, folks. It hurt in the past, and it hurts now. And for PWDs, it doesn’t have to be as obvious as, “Sit in the back of the bus.” It can be as benevolent as, “I know you’re having trouble making friends; have you tried Best Buddies?” (Another organization, by the way, whose benevolent intentions have turned PWDs into projects).

Segregation is still a barrier. Let’s call it what it is, and after we’ve done that, let’s break it down, for good.