Blog Bonus: Dear Church, Round 2

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.

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Can I Just Get Some Basic Human Rights?

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.

The Segregation Stops Here

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.