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Archive for September, 2014

Out of the Nest: What Do We Owe Adults with Disabilities?

Hello readers,

I recently asked myself this question as the news and life’s events came together in my brain again. My little brother will “leave the family nest” in less than a month to marry my future sister-in-law and move a short distance away. Is he prepared to leave in terms of life skills? Well, he can cook a little bit–as in, mac and cheese, tacos, that sort of thing. He can do laundry to a point. He knows the value of a shower and brushing his teeth. So yeah, he’s ready. Wouldn’t be considered ready if he had a disability of any kind, but we’ve covered that a lot.

At the same time, I ran across some disturbing news from Disability Scoop and other disability news outlets that I frequent. In a nutshell, the news is that even though services for children and teens with disabilities abound, those services become minimal or perhaps even nonexistent once those children and teens become adults. In fact, Sean Heasley of Disability Scoop points out that where an adult with a disability lives is often the determining factor in what services are available, as well as how inclusive they are. In other words, if you live in the wrong state, you’re just plain out of luck. Available “services” generally mean more segregation, more “special” activities, more people controlling your life. A transition–but not a transition at all because nothing has changed. You’re just older.

Been there, readers. Been there, done that, explained my goals ad nauseam, listened to myself and my family members argue with service providers who “just didn’t know how to” help a high-functioning adult. And yet, I consider myself lucky because what happens to adults who aren’t as high-functioning? They may get more “services,” but they often end up far more segregated, struggling with the same emotional, spiritual, mental, and physical issues they have since childhood because no one sees them as whole people.

So the question is, do we just shove those adults out of the nests the way birds do to babies and say, “Good luck?” No. We can make services truly serve–by focusing on the whole person, not the disability diagnosis. But we do owe these adults more than we’re giving them.

Kathie Snow wrote a piece on her website entitled, “What We Owe Children.” I’m going to take her concept and tell you what I think we owe adults–all adults, even and especially those with disabilities.

We owe adults acknowledgment of the fact that they are grown-ups.

We owe adults the services they need and request, not the ones we pin on them or say they have to take because that’s “all we have.”

We owe adults the time and effort it takes to think outside the box.

We owe adults–yes, even those with severe disabilities–a living wage and the satisfaction of earning real money that they can use however they want.

We owe adults choices in where they will live and work, and where and with whom they will socialize. We owe adults the trust to make good decisions about these things, with our help, but not our intrusion.

We owe adults relevant, meaningful goals, if indeed goals must be set.

We owe adults basic human dignities. Everyone has a basic human right to be fed, to be clothed, to be comfortable in the temperature relevant to the moment, to be clean, to get enough sleep, and to pursue leisure activities of their choice.

We owe adults the chance to love and be loved.

We owe adults respect.

You may have noticed that these things aren’t so different from what we owe children. That’s because children grow into adults, and adults are former children. The point is that they remain human beings the whole time–and these are what we owe humans, disability or not. We talk about human rights–so let’s stop pretending that, once you get to a certain age, those rights go out the window because you have a disability. I mean, just because you’re not a cute little kid anymore, just because you never “succeeded” at some therapy goal when you were five–it doesn’t mean the world should give up on you. Because really, readers, how would you feel if the world gave up on you because you, say, never quite mastered your times tables?

Right. So let’s approach each nest with caution, open our hands, and say, “Let’s help you fly!”

Blog Bonus: Excuse Me, Princess! What Entitlement Is in Disability World–and What It’s Not

Hello, readers,

That’s right–ding-ding-ding! Today you get a bonus round! I’d like to thank my friend J. for giving me the idea for this post. I’d also like to thank the bloggers at Smockity Frocks, a blog dedicated to large families, homeschooling, Christianity, and more.

Smockity Frocks recently posted a list called 25 Ways to Teach Your Children an Attitude of Entitlement. These were not aimed specifically at parents of children with or without disabilities. A lot of the tongue-in-cheek tips apply to every kid and parent. You know, like “Give your child a present on someone else’s birthday” because otherwise, he or she will feel left out. (I tried asking for a present at my little brother’s birthday once because I had seen my mother’s friend do it for her kids. I was told in no uncertain terms that this was not gonna happen). Or, “Make your child a special meal if he doesn’t like what the rest of the family is eating.” I confess–guilty. My mom was a picky eater too as a kid, so she often let me and my brother eat alternative things if we didn’t like what was served. But my dad didn’t go for that.

But even though all these “tips” can apply to all kids, I saw some that could apply more to kids with disabilities because their parents might treat them differently. And by that, I don’t mean, giving them the modifications they need. I don’t mean, treating them differently from siblings because every kid is an individual. After all, you wouldn’t give George glasses just because his little sister Karen had them, if George’s vision was 20-20, now would you?

By “differently” I mean an attitude that says, “Disability comes first. My child is pitiable because of it and can’t be expected to act like any other kid. My child cannot be held to any real responsibilities.” As it has been said, No responsibility = no real life.

But then I realized that on the other side of the coin are people who scream, “Entitlement!” whenever the PWD is given any latitude at all, or any particular help that the temporarily able-bodied population can’t access and in fairness, should not access. These are people who claim PWDs shouldn’t have SSI because it’s “living off the government.” It’s teachers who claim that, “Yes, Melissa has dyslexia, but she shouldn’t be read aloud to during tests–that’s an entitlement and unfair to the other kids.” It’s county social workers who claim adults with disabilities are “entitled” to group home placement, but not to lives of their own. That’s being “uppity” and “entitled.”

Double standard much?

So what is entitlement? What’s not? When do we give latitude, and when do we good-naturedly say, “Excuse me, princess?”

Let’s go back to Smockity Frocks. I’ll borrow some of their top 25 ways to teach entitlement and analyze from a disability perspective.

1. “Don’t make them clean up their own messes.”

It’s entitlement if: You pick up the toys your child is capable of picking up, with modifications. You lessen the cleanup or other chore to a ridiculous degree. You make siblings clean up the PWD’s share of the toys (or whatever the mess is, once they get older).

It’s not if: The PWD legitimately needs help with high shelves, heavy objects, and so on. The PWD teams up with others to clean. You offer help after watching the person struggle.

2. “Take their side no matter what, even if they’re being called out for a disciplinary issue.”

It’s entitlement if: There is a legit problem. If Adam hits a classmate for taking too many crayons, he should be disciplined. If Brenna constantly refuses to do work, with no disability-related issues present, the discipline issue is legit.

It’s not if: Modifications are being called “entitlement” in any way. Your child is being bullied by a teacher or administrator because of disability. A legit concern of your child’s is being branded as a behavior problem. Legit voicing of opinions in a respectful manner is being called uppity or disrespectful.

3. “Don’t make them serve others or wait to be served.”

It’s entitlement if: Waiting is the expected polite behavior, like in a restaurant, disability or not. Your child or loved one can see and respond to the need. For example, just because a kid has a cognitive disability, it doesn’t mean he or she can’t be taught the value of donating toys and books. Your child expects to be served at the expense of others who’ve been waiting longer or have more pressing needs.

It’s not if: The need is too big or would be unsafe for your loved one to meet (example, going to the Third World is often unsafe for PWDs because accessibility laws are nonexistent or minimal). Your child or loved one is in a place where disabilities must take priority, like on a bus with priority seating. Your loved one is being discriminated against through a waiting period that would not exist if disability were not present.

These are just a few examples. Let’s keep them in mind, and be careful how we use the E word.

Legacy: Are We Leaving a Good One for PWDs? What Kind Will They Themselves Have?

Hey there, readers,

It’s been an interesting few days. I’ve got good news and bad news. The good news is that last Friday, I began my eleventh Beth Moore Bible study. She’s not the only Bible teacher I’ve ever studied under, but she’s my favorite. The study is called Breaking Free: Making Liberty in Christ a Reality in Life. I’ve wanted to take this study because I so often find that the promises made in the Bible, and by Bible teachers, to Christians are tough to “pin down” during the daily grind. So, I’m pretty excited. Finished the first week of homework/discussion today and will have a session every Friday for the next ten weeks.

The bad news is that Mamaw, my maternal grandmother, has died. She passed around 2:00 AM on Tuesday after a mercifully quick bout with a blood clot/stomach issues. Our relationship changed as I grew up, as happens with most grandchildren and grandparents. But very, very few people get to say they had 28 great years with a grandparent, or that they have a living grandparent left (that’s Nana, my grandma on the other side). I already miss my Mamaw but cherish a bunch of good memories.

Both the Bible study and my grandmother’s passing have me considering legacies. How do they tie in? Well, first, a very quick and dirty history lesson. My study began with an overview of the reigns of four Judean kings as told in 2 Chronicles: Uzziah, Jotham, Ahaz, and Hezekiah. Each of these kings reigned during the ministry of the prophet Isaiah, and each had a different relationship with God and His commands. If you read 2 Chronicles 26-28, you’ll find that Uzziah and Jotham walked with God and did quite well as kings, but they allowed laziness, pride, and complacency to influence their reigns. Ahaz and Hezekiah were sort of the extremes of the spectrum. Ahaz was a wicked Judean king who practiced sorcery, worshipped idols, and sacrificed his own son to pagan gods, among other things. Hezekiah was one of Judah’s godliest kings but again, allowed pride to influence his reign. He did repent, but his pride and the ramifications of it, such as cozying up to Babylon, was instrumental in the Babylonian captivity the nation of Israel would experience later. (At this time, Israel was divided into two kingdoms, Judah to the south and Israel to the north).

Beth Moore’s very first lesson/homework session, Week 1 Day 1, details the reign of Uzziah. He became king at age sixteen, and to a little boy like Isaiah, he would’ve been a hero. This guy was not only a godly king, but a successful farmer, a successful warrior, and a clever inventor. Scripture tells us he built “war machines” that for the time were like the stuff you see in spy flicks. But Uzziah eventually stopped giving God the credit for his successes. He also decided he was going to go into the temple and burn an unauthorized incense offering, even with 81 priests decrying the decision. Big, fat no-no!

God responded to Uzziah’s pride, allowing him to contract leprosy, which he had the rest of his life. Now, does God respond to us, believers and nonbelievers alike this way now? Thanks to the new covenant, no. Just wanted to clear that up. But Uzziah did contract leprosy, and the case was apparently so severe that when he died, his legacy was summed up in three words: “He had leprosy.” That’s the first thing and maybe the last thing folks had to say about this great king.

So, what in heaven’s name does this have to do with people who have disabilities? I bet you can guess. Really, it’s a two-fold issue:

1. Are we teaching our loved ones with disabilities that the first and last thing about them is, “He/she has a disability?” Is the disability the first and only concern? Is it addressed at the expense of strengths, at the expense of that person’s dreams, desires, and abilities? And:

2. What legacy are we leaving PWDs? Are we, consciously or not, teaching them to be ashamed, apologetic, or angry about who they are? Are we behaving as though our living loved ones are already in coffins because “their disability is just too severe”? “He/she will never do/be much”? When they die, what will we remember?

Will it be the disability? Or will it be the person?

I won’t remember my grandmother’s final illness. I will remember her hugs, her gifts, her sweet treats, her love. But suppose the person I lost had been a young cousin with a severe disability? I don’t have one; that’s just an example to prove a point. People without disabilities are generally remembered positively, unless they were just plain horrible and sociopathic. Don’t PWDs deserve the same legacy–living or dead?

Off the Leash: Should We be Tracking PWDs?

Hi readers,

Here’s hoping everybody had a relaxing Labor Day weekend whether or not you have a traditional 9-5 job. If you’ve seen any of my previous posts on Labor Day and the kind of work PWDs can do vs. what they’re often made to do, you know what I’m talking about.

My friend galacticexplorer and I recently spoke about my last post. He and I talked about the fact that often, PWDs are not allowed to experience life. Thankfully, that’s not true for every PWD. Because of inclusion and a shift away from the medical model, society has gotten better at including persons with disabilities in school, college, work, relationships, and so forth. But so many PWDs are still left with gaps in their social and real world knowledge. That is, they may be taught to fold laundry because it’s a life skill, but do they know how to hold an authentic conversation with the person at the next Laundromat machine? They may know table manners, but do they know it’s okay to speak up and pick the restaurant when their friends and family go out? To order their own food and send it back to the kitchen if the order is mixed up? (Or is that considered being “noncompliant” to the wait staff)?

But even though PWDs have gaps in their social knowledge, even though they’re often barred from experiencing life, I see the able-bodied community trying to make people with disabilities’ lives more convenient for itself. That is, the (temporarily) able-bodied community is constantly trying to come up with ways they can keep tabs on PWDs so the PWDs won’t “disrupt” what is considered “normal” life.

Some of these methods we already know about. An IEP is a method. A behavior plan is one. A group home is one. Therapy is, at its worst and in its own way, a way of controlling the PWD and his or her life. Now granted, some of these methods may be necessary. For example, IEPs help ensure educators obey the law and do right by students with disabilities–in the best-case scenario. But some of these methods are questionable and even frightening.

One such method that recently came to my attention is tracking. That’s right, folks–there is currently a push to outfit children with autism with “tracking devices.” Yeah, like those collars they stick on wildebeests in the Serengeti. Probably not quite that primitive, but you get the idea.

The justification for this push is, “Autistic children ‘wander.'” And don’t get me wrong. I have heard plenty of horror stories wherein a child or teen with autism, or even an adult with the intellectual age of a child, wandered away and was hurt or killed. But I’m going to raise a question. Hands up if you know what it is.

Right: would you place a tracking device on someone without autism? And, which disability (ies) are next?

Some people are already talking about doing exactly this. News outlets have reported that as early as 2017 (let that sink in folks; that’s a little over TWO YEARS), everyone might receive a microchip to prevent identity theft, kidnapping, and various other tragedies. Of course, the people spearheading this movement say the chip implantation would be by personal choice. But for how long? The fear of mandatory chip implantation already runs rampant, thanks in part to certain interpretations of Revelation like the Left Behind series. (Not coming down on a side of that issue here, though you’re welcome to ask me about it in the comments section).

So here’s the deal. When it comes to chip implantation for everybody, including the able-bodied, there’s a lot of fear and decrying of the idea. But specify that the person has a disability? Boom–suddenly that person needs to be tracked because otherwise they’ll wander. In other words–horror–they might go somewhere you disapprove of! They might not be under constant control!

Think about it. These days, what do most of us do when we’re out at Wal-Mart or Costco or wherever and see parents with their kids on leashes? We think it’s nuts. What do parents do with able-bodied kids to teach them not to wander? They say firmly, “Stay with Mommy and Daddy or there will be consequences.” They say, “You may go play, but only where I can see you.” They may give an age-appropriate talk about strangers. If they lose a kid in public, they page the kid, who they’ve probably already taught, “Go to the front and ask for help, or find a policeman/security guard.”

Now, I get that those rules are different when you’re dealing with severe disabilities. If your grown child with autism functions mentally at age five, he or she should probably be taught to stick close. But really, guys, what is UP with the tracking devices?

Many parents and loved ones of PWDs prize independence. Whether they should or not is another discussion. But consider this. If you teach people that they must be on a leash, they will never learn to function without one.