Blog Bonus: Reinventing the Wheel (Chair, That Is)

Welcome to the bonus round!

Since September has been such a busy month, I decided to give all my lovely, patient readers a bonus “egg” from the Nest. Today’s topic centers on redeeming and reinventing the wheelchair.

If you’ve read some of the early posts on this blog, you know I’ve talked a little bit about wheelchairs–the benefits of power wheelchairs over manual ones, for instance. I’ve also talked about how it gets on my nerves that so many people assume disability always = wheelchair, and that some people will easily accommodate for wheelchairs but not much else. However, I have never dedicated a whole post to wheelchairs and I think it’s time I did.

An article written for disabledworld.com in the mid-1990s said that over 6.8 million Americans use wheelchairs and other mobility devices. I’m confident that number has grown significantly in the 20 years since that article was written. According to the article, more than 4/10 of people who use mobility devices are unable to perform major activities or activities associated with daily living. That’s 2/5, or two out of five of every mobility device users. Four-fifths of these people report they have difficulty using or getting to public transportation systems. In other words, the wheelchair is a big presence in the world of disability, folks–and maybe we’re not responding to it as well as we should.

I think there are a few reasons for the lack of response, or inadequate response. Here they are:

1. Unawareness of universal design. The ADA mandates that public buildings should be accessible. Yet many are not; they were built before the ADA was signed and so “grandfathered in.” I went to a college with this issue; one out of about five of their major buildings had an elevator. And even though I did not use a wheelchair, I still had a hard time because not every staircase had railings. Not every curb had a cut or was associated with an alternate route. Not every sidewalk was safe. In fact, I once did a face plant on the concrete in front of about 20 people due to an unrepaired water break. Not pretty, and it netted me a trip to the nurse’s office.

Now, am I saying my college was evil and discriminatory? No way. But “grandfathered in” should not be an excuse. I’d like to see more classes on universal design, rather than a “regular” architecture class inviting PWDs to speak on the issue one time, and then saying, “Okay, that’s done.” I’d like to see children and adults who use mobility devices able to get around on their own, everywhere, without having to stop their normal trajectory and think, “How do I get around this obstacle”–their fifth that day?

2. Lack of true knowledge. As I have said before, most people think wheelchair users will be fine if they just stick a ramp up. Sometimes, though, that ramp is not researched or put in correctly. Sometimes it doesn’t even help. I once saw this on a T-shirt that listed 10 things never to say to a PWD: “Yes, we have an accessible entrance. It’s in the alley next to the garbage cans–just go through the kitchen.”

Really, people? What is this, 1898 England? I wasn’t aware most people still had separate entrances for the, snark, snark, “gentry” vs. “lower class.” You say that’s offensive of me to say? Well, too bad, because that’s exactly what a solution like the one above sounds like to me. Make the effort, before your lack of knowledge becomes total ignorance. (Note that I’m not saying it’s bad for an accessible entrance to be at a back door, per se. It looks awful, however, if that entrance is also at a place where you keep your garbage, or in an area that sends the message, “People who walk, come in–people who can’t, let’s hustle you inside under the radar.”)

3. Money worries. Yes, yes, I know. The economy is tough. But think about this, okay? If you own a store and employ someone who uses a wheelchair, don’t say to that person, “I can’t put in an automatic door because it costs too much money.” Ideally, access should be part of every business’ budget. Remember too, that when automatic doors or other “modifications” are put in, but not specifically tied to disabilities, money is often not raised as an issue. There’s something wrong with that.

4. Misuse of interdependence. I have said before that in many cases, interdependence is better than independence, which those who work with PWDs often hold up as an ultimate goal. I stand by that statement. However, don’t use interdependence as an excuse not to provide access. If John uses a wheelchair at work, don’t say, “Yes, I know those doors are heavy–just ask whoever is nearby to help.” Well, what if there is no one nearby? What if John wants to go somewhere on his own? What if he needs access to private files that are inside a room with an inaccessible entrance? I think you get the idea.

5. Stereotyping. This is the biggie, so I saved it for last. This is why I believe we need to “redeem” the wheelchair. Redeem it from what, you ask?

Well, you probably know subconsciously without my telling you. For decades, even centuries, the wheelchair was a symbol of injury and illness. That wasn’t a bigoted thing, either. It just happened because way back then, you normally saw wheelchairs in hospitals and clinics. They were used to transport sick and injured people, many of whom had severe illnesses or were too weak to move around. People in wheelchairs were called “invalids” or “crippled”–because that’s just how we did things. As many history teachers will tell you, we can’t judge the past by what we know now in the future. In other words, yes, we can and should judge things like slavery or the Holocaust because those are morally wrong no matter what. But we can’t judge the people of the past for using words we no longer use or seeing things differently than we do now.

The good thing about living right now though, is that we know better. Wheelchairs no longer automatically equal illness. People who use wheelchairs are vibrant, active, and capable. Yet so often, we continue to act as if people with disabilities, and wheelchair users in particular, are none of these things. Wheelchairs are so inextricably tied to disability that when disability is portrayed in the media, the wheelchair is used to represent all disabilities whether that’s accurate or not. (Most of the time it isn’t). People in wheelchairs are often seen:

-Slumped over
-With jerking arms and legs
-Unable to speak intelligibly or at all
-Drooling
-Wearing exaggerated smiles
-With heads bent or at odd angles

Now, I am NOT saying any of these things are bad. If you use a wheelchair and you can’t hold your head up or your limbs move without your permission, fine! Every disability has a different face and that may be yours. But when the media and the majority of the world take wheelchair use and reduce it to a worst-case scenario picture, or play up the slumped figure and the exaggerated smile, we all lose.

It’s time to reinvent the wheelchair. How do we do that? It won’t be easy, and it may cost money. It may entail some research and it will involve getting to know people beyond the stereotype. Here’s what we do:

-Make universal design a priority
-Encourage comfort and familiarity with many mobility devices. If, for example, you own a company and are curious about accessibility needs, yes, go out and talk to people with disabilities. But at the same time: try using a wheelchair for awhile. Ask a local clinic if you can use a pair of crutches or braces while walking through their campus. The more you know how using a mobility device feels, the better you can serve others.
-Look for active, vibrant people who use mobility devices. If you’re a parent or a teacher of children and teens who use them, encourage activity of all kinds–not just sports, but academic and musical stuff, too. Too many students love theater but don’t participate due to lack of access. Some students might be great at Knowledge Bowl but are skeptical of traveling for the same reason. Make access possible and root for them in all they do.
-Make the wheelchair or mobility device itself attractive. No, a pink wheelchair won’t take cerebral palsy away from that little girl in your class. A crutch painted with favorite team symbols, is still a crutch. But artistic efforts where mobility devices are concerned definitely raise the “cool factor.” You know the phrase “pimp my ride?” Well, taking this in the spirit that it is meant, go to it, already!

Wheelchairs and mobility devices are not negative things. Let’s start treating them like what they are: modifications that help people get around, live fulfilling lives, and even feel a little bit cooler.

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When Independence Hurts: When to Push and When to Back Off

Hello readers!

Happy Fall Equinox, and I am so glad to be back. For two weeks, my day job has included a huge workload that left no time for anything else. Now I’m catching up on some important things, including this blog.

During the past two weeks, I went to my local Barnes & Noble. I do that most weekends, to browse if not buy. This time, I was drawn to a book called When God Doesn’t Fix It by Laura Story. If you don’t know who that is, she’s a musician and singer whose hit song “Blessings” was at the top of the Christian Billboard Charts for four weeks in 2013. In fact, it was #1. Laura also knows firsthand how it feels when you have problems you feel like God should fix or cure or change, but He doesn’t do it the way you’d like.

I could go on and on about the things I learned from this book and I probably will talk about it throughout the blog later. But for now I want to focus on a new thing that I learned about disability, and the questions this new knowledge brought to mind.

If you don’t already know Laura’s full backstory, she is married to a wonderful man named Martin Elvington. In 2005, Martin started experiencing disturbing symptoms such as incapacitating fatigue and headaches. Doctors discovered he had a benign brain tumor. The anticipated outcome was that the tumor would be removed without complications, Martin would recover, and he and Laura would get back to normal life. As you might guess, that’s not what happened.

Martin suffered complications from the original surgery and an additional one to patch a hole in his nose that was allowing spinal and brain fluids to leak out. Long story short, the guy was in a medically-induced coma and nearly died. When he came to, he had to learn to do basic things again. Martin succeeded in relearning to walk, eat, and many other things that rehab facilities work to reteach brain surgery patients. But he continually scored poorly on short-term memory evaluations.

To this day, Martin Elvington has a significant disability related to short-term memory loss. The modifications he uses to get through daily life include working for six months to memorize the names of all the boys he coaches on a local Little League team. He and Laura practiced bottle-feeding and diaper changing over and over and over again so that Martin would be prepared when their daughter Josie was born. Martin cannot work at traditional jobs because they often rely so much on memory and following long sets of directions, and for months, Laura never left him alone.

This does not describe the place Martin and Laura are in now. Martin still has his disability, because as we know, often those don’t get fixed even by God Himself. But he is much more independent. The key is, Laura had to learn to let him be so, and she had to make him be so at times.

During the early days after her husband’s surgery, Laura often treated Martin like a little kid. She would lay out his clothes for him, tell him to take his phone and keys everywhere, explain things in small steps, and so forth. That might seem natural and safe to do. If you are a parent or a loved one whose child or niece or nephew or whoever has a disability, I’m sure you can relate on some level. I know my parents could, especially when I was little. When you have a loved one with a disability, it’s often easier to do things for them. You can do it faster, more efficiently, and better than they can, right?

Maybe…but that’s not the path you should stay on.

I will admit freely, there are times when I wish people would do more things for me. When I was little I rebelled against occupational therapy in particular. I felt like, by asking me to dress myself, hold a pencil, whatever, those therapists were treating me like a baby. I also felt that parents were there to do stuff for their kids, right, so what was the problem?

Of course, kids can’t see down the road very far. When you’re six or eight or even ten, you don’t know that the consequences of having someone do everything for you will eventually hamper your adulthood experiences and sense of self-worth. Adults like Martin Elvington can understand this better, but spending time on basic tasks is often so draining, and so humbling–let’s just say it, humiliating–that they’d rather not even deal.

I get that. I totally do. I also understand, if from an outside perspective, that independence can hurt. I commiserated with Laura when I read that it hurt her to allow Martin to miss Bible study and other commitments because he didn’t remember to set his alarm even after they’d been over the drill and practiced. And I commiserated with Martin, because he didn’t ask for a memory-related disability. Why should he have to face consequences and fail because of something he could not control? But I also knew, from experience and from rooting for this couple, that it was better for Martin to be independent.

Maybe you have a Martin or Martina in your life. It could be your six-year-old with autism who has the capacity to learn to read but balks at the idea. It could be your eleven-year-old with Down Syndrome who rebels against speech therapy or learning to use a fork and knife as well as her peers do. Maybe it’s your teenager with cerebral palsy who needs to exercise independently but won’t. Maybe it’s an adult who could work, but is afraid to, so he stays home.

So the question is, when do you push? How do you push? When do you let independence hurt, and when do you back off? I’m not an expert because I am the person with a disability in this scenario. Yet I can give tips based on my experience and what I have learned from others. Here they are:

Before you push, observe the situation. Maybe that six-year-old with autism hates reading because he can’t see well, in which case he may need glasses or large print. Maybe it’s because he fears being made fun of. In that case, he could begin by reading aloud privately in his room, or reading to a pet or toys. Maybe your child with Down Syndrome would do better with an assistive speech device than speech therapy, or maybe the therapist is the one pushing too hard. Observe, and think about how the PWD must feel in that situation, before stepping in to push.

Pushing does not = punishment. Never say to a PWD, “Fine, if you don’t want to do this, you can be helpless your whole life” or, “Fine, you better start saving money for a wheelchair if you don’t want to walk.” Pushing in anger makes people feel trapped, and they will either retreat from you or bite you. Keep it firm, but keep it gentle.

Example: Let’s say that, like Martin Elvington, Abby has short-term memory issues. Abby wants to go to a school club with her friends, but it meets before school and she’s never had to set her own alarm before. If she misses her alarm, Mom and Dad should not shame her. Instead they should say, “That’s okay; you’ll get it next time,” or, “This doesn’t feel good, does it? Let’s start working toward next week now so you can be on time.”

Look down the road. In other words ask yourself, is my child or teen’s inability to do X task now going to influence his or her life later?

Examples of “yes”: Dressing and grooming oneself, feeding oneself, taking care of one’s own belongings as much as possible, following schedules, exercising and healthy eating, basic reading and math skills (or whatever educational skills your child can meet. If, for example, your child is gifted but struggles in math, do not automatically exempt her from mathematics. Instead, push her to continue seeking help and getting better).

Examples of “no”: Perfect speech, tying shoes, unloading the dishwasher within 20 minutes of it running, exercising in a specific way, making consistent eye contact when the disability somewhat precludes that skill, giving up “childish” things if they are of special interest or are on the person’s intellectual level.

In other words, will this situation negatively impact your loved one’s health and well-being, ability to function on basic levels, and ability to reach his or her full potential? If yes, then push. If not–if the issue can be addressed through assistive technology, if modifications would take pressure off the person, or if expectations don’t line up with those of TAB peers–don’t push. (For example, we don’t blink if a TAB person wears loafers, so what’s the big deal about shoe-tying)?

Yes, independence can hurt sometimes. Yes, your loved one, especially a child, may jab you with accusations like, “If you loved me you wouldn’t make me do this.” It’s tempting to get angry at that, but please don’t. Instead, say, “This is *because* I love you, and I’ll love you no matter how you do this, or when you do it, or if you learn to do it perfectly. What’s important is that you be the best you can, not in spite of disability, but with it.” Because you see folks, a lack of independence and responsibility can teach people to be ashamed of their disabilities. Let’s break that cycle. There will be pain. There will be sweat and tears and maybe some blood.

There will also be great rewards.

To learn more about Laura Story and her story, go here: http://laurastorymusic.com/new-book/.

Good Grief: Should We Grieve Disabilities–And What Can We Do Instead?

Hello readers,

I hope everyone had a happy Labor Day filled with fun and relaxation. Now back to the grindstone, or the blogosphere as the case may be. This is the first topic I had on the docket for September, and though it might seem a bit odd, I think it’s one we need to address.

I got the idea for this one after seeing a particular article floating around Facebook. The article’s author has a young daughter with Down Syndrome. She claims that had she known her daughter would have this disability before she was born, the mother would have had an abortion. She also believes every woman should have the right to choose, especially if the baby will be born with disabilities. Now, I’m not here to argue about abortion. You guys know I’m pro-life, even and especially for babies with disabilities (and if you didn’t, well, you do now). I don’t judge people who abort–or at least, I do my best, since I’m increasingly learning that judgment is human nature. After all, for every thousand mothers, there are a thousand reasons. Does that make it okay? In my estimation no, but there you go.

Even though I don’t agree with abortion, this perspective did raise a question in my mind. I was thinking about parents who abort because they’ve been told their baby will have Down Syndrome or another disability. In a lot of those cases, the diagnosis is a done deal–there is little to no chance the doctor made a mistake, in other words. And I thought, one of the reasons those parents abort, might be because they’re grieving. Not grieving in the traditional sense, but grieving all the things they have been told, or believe, their child will never do or be.

Now, you guys know that as comedian Brad Stine once said, this is where I (usually) start getting a little testy. After all, who your child will grow up to be and what he or she can do is not ultimately a doctor or therapist’s decision. Furthermore, I hate the idea of people grieving disabilities, as if people with them will never amount to anything and are in fact already dead. Do this with me, all right? Take disability out of the equation for a minute. I’m going to give you an example that the Disability Services director of my university gave me when he was explaining why this “grief mentality” is so harmful. (This was pre-paradigm shift, when I still thought of disability in very medical, clinical, and negative terms, even relating to myself).

Anyway, he says to me, “Imagine I’m your doctor, and I just told you that you’re pregnant. But I also told you you’re going to have a girl.”

“Great!” I said. “I’ve always wanted girls.” (Still true, by the way, although yes, boys are wonderful, too).

“Yes, but what if I then said, you need to consider your options here? After all, your girl will grow up with wage gaps where she works. Men may disrespect her. She may develop eating disorders or get raped. She might end up a teen mom. Is that the kind of future you want for your kid?”

That’s nuts, right? Yet, when a doctor says the same types of things–except, substituting Down Syndrome or hydrocephalus or whatever, most people think it’s okay. It’s not–but it occurred to me recently: are the emotions okay?

Sometimes when you’re an advocate–even mainly on the blogosphere like me–you have to step back from your own emotions and take a hard look at someone else’s. Recently, I’ve been stepping back and taking a look at the emotions of parents, expectant or already holding that baby or toddler, who’ve been told,

“I’m sorry. Your child will have Down Syndrome.”

“I’m sorry. Tests indicate your child has cerebral palsy.”

“I’m sorry. There is fluid in your child’s brain. Our experience treating this condition indicates he probably won’t live more than six years.”

No matter how you slice it, no matter how hopeful you are or what treatments you use, there is going to be grief, right? I think there must have been for my parents, because back then they didn’t know what CP would entail for me. In the 29 years since then, there has been grief for us all. I have grieved because I don’t have the physical freedoms other young adults do. I grieve because I want so much to be active, and try really hard, and yet I will never be as active or fit as some women. There will be, and are, tears. There will be anger, and sadness, and fear. There is no getting around it–no good attitude that will make things okay, no Prozac that will lift your serotonin levels enough to pretend your child won’t struggle, and may not be able to do basic things.

So I’m not going to censor those emotions. I’m going to go on record and say it is good and right to feel them, if and when you need them.

Now, a lot of people, especially parents, might disagree with me. That is, they think if they go through a grieving process, they’re saying the child is or will be “less.” That they are, in a way, speaking prophecies of doom over that child. I get that, because in a lot of cases, that’s exactly what happens. There is so much focus on the grieving process, it takes over. In fact, many doctors and other experts tell parents not to be optimistic–that if they show any hope for their child’s future, they’re in denial. If you ask me, that’s a disgusting attitude, and I wish all these experts would get over themselves, already.

So I guess the only conclusion I can come to is: disability is natural, but so is grief–in certain doses and packages. That is, I’m not going to censor anybody for grieving what they know their kid won’t do or can’t do right now. But I will speak out against staying stuck in grief mode. It’s bad for the person with a disability, because it teaches them to go through life with a “poor me” outlook. But it’s also bad, even worse, for that person’s loved ones, because it leaves no room for hope. It leaves little room for progress or change. For example, let’s say that Eamon has Down Syndrome. His speech isn’t clear, but at the end of his kindergarten year, his teachers and speech specialist report that Eamon’s speech has improved 20%. The optimistic parent says, “Yes! Let’s keep going!” The grieving parent says, “That’s not enough. He’ll never talk as well as the other kids can.” And yeah, I know we all have days when having, or living around, disability sucks. But–and I’ll be frank, because I’m talking to myself too–if we stay there, we’re the ones who suck.

So yes, grieving is good. Go through that process as you need to–and get professional help from a therapist, clergy member, whoever, if you like. But how should you move out of the grief process? I’m no professional, but I’m going to try to give some stages, just like there are stages of grief (denial, anger, sadness, bargaining, acceptance).

1. Groping. Okay, so you have your child. You have a diagnosis. You’re ready to seek treatment and you know you’re ready to cheer that kid on from now until Doomsday, if it comes to that. But maybe you’re overwhelmed at what your doctor said. Maybe the treatment options boggle your mind–or conversely, there aren’t enough where you live. This is what I’ll call the Groping stage. This is where you sort through what you’ve been told or learned, and decide what to keep and what is detritus. (That may change as the child ages; I’m going to clarify that you may go through these stages a lot).

2. Grouping. This is where you start seeking support from therapists, teachers, loved ones, friends, and so forth. Your child will thrive not only because of you, but because of a strong support network whose members understand he or she is a whole person with dreams, goals, brains, a heart, and potential. I was fortunate enough to have that, and so I push hard for others to get it, too.

3. Getting and Giving Grace. This is what happens when the experts won’t listen, the treatment doesn’t work like you thought it would, or to be honest, your kid is driving you batty. Certainly, this can cause anger and sadness reminiscent of initial grief. Again, do not stay stuck there. Give yourself some grace. Say, “Okay, now we know one way that won’t work.” Give yourself grace for thinking things like, “I wish I could just fix him!” You can’t, but you’re not a horrible parent for thinking that. And give other people grace, too–yes, even those “experts” who say stupid things like, “She’s not really autistic, because she makes eye contact. She just needs a good spanking.” (Well, okay. Before you give those people grace, you might want to give them a good piece of your mind–and pray a flowerpot conks them in the head. Just kidding. Sort of).

4. Gaining Ground. This is the stage where you look at how far you’ve come and pat yourself, and your child, on the back. This can happen because you got through a day without a meltdown, because your child wrote his name or used the toilet, or because your child, who the experts swore could not function at school, just brought home straight A’s. Celebrate! (And, if you want, give the experts a big, “Nyah-nyah-nyah-nyah-nyah!”)

5. Glowing. You may never be able to say, “I planned to have a child with a disability.” You may never say, “This is the life I want for my kid.” But when you can look at him or her and say, “My child is perfect”–and mean it, not just as a sappy inspirational platitude–that’s when you get to glow. And if you’re a person with a disability and can say that, you can glow, too. Of course, not every day is a glowing sort of day–but I hope we’re all getting there.