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Archive for March, 2015

Disability 101: How Disability-Based Education Would Greatly Help Our School Systems

Hi readers,

I’ve returned from hiatus to write one more March post. The title might make you think, “duh,” but hear me out.

I was inspired to write this post after a tremendously uplifting opportunity on my Florida vacation. I was visiting cousins, and they weren’t on spring break yet. One of those cousins teaches kindergarten at a private Christian K-12 school. I spent two days helping out in her class. I was also offered to give my testimony–how I became a Christian, how disability has impacted my spirituality, and why I am still a Christian despite it–during the school’s chapel service and to the affiliated church’s youth group.

I was only given 10 minutes in chapel due to the schedule and the presence of little kids who can’t sit still through a lot. Youth group was longer and gave me time for a Q&A session. Most of the questions were ones I get often–how does CP specifically affect you, have you ever been bullied because of it, and so forth. But one of the youngest kids raised his hand and asked, “Do you still have cerebral palsy?”

I explained I will always have CP because there is no cure yet, and I’m okay with that. It occurred to me, though–this kid did not even know the basic facts of CP, such as that it is not curable. Yet he, like all his group-mates, goes to school with students who have disabilities. It occurred to me: how many students are going to school with classmates who have disabilities, and yet have little to no basic knowledge of what the disabilities are and how to interact with those kids as peers, not just “special buddies?”

Now, we’ve talked about the second half of that question a lot. PWDs deserve to be interacted with as people, period. But I will acknowledge that it can be hard. It’s hard for adults, and we’re supposed to know better. Imagine being a kid–a kindergartner, a ten-year-old, a twelve-year-old. You see a classmate with suspected autism have a floor display because your teacher took away the pencil box he was playing with instead of listening to directions. You want to go up to your classmate with CP and ask him or her to play–but what if they can’t? You want to ask your classmate in a wheelchair or with a hearing aid if he or she needs help, but what if they get offended? Imagine being a kid who’s been taught only about the worst-case scenarios of these and other disabilities. You’d be a little scared of that classmate, yes? Especially if they were already in a segregated environment and the teachers and administrators didn’t encourage interaction.

See, that’s where education comes in. You are what you learn, and kids will respond to what we as adults teach them. So we have to teach them about disabilities the way we do about race, religion, and other differences. The problem is, teachers in public and private schools alike get cheated out of these teaching opportunities because of standardized testing, tight schedules, budget constraints, and the like. So what are some basic things teachers and other adults can do to teach about disabilities? Here are a few basic tips:

  • As much as possible, let the students with disabilities be the teachers. If you see your class has questions, invite them to be asked. Keep question and answer times on the child’s level, and look for natural opportunities to use them. For example, if you’re a teacher and know some of your students will have disabilities before school starts, give the class a heads-up about what the disabilities look like and what questions are appropriate.
  • Encourage your students with disabilities to interact as much as possible with TAB peers. Vice-versa works, too. Strive for mixed groups of varying ability levels, as much as your curriculum allows.
  • Teach students the basics of some common disabilities: CP, MS, Down Syndrome, autism, and so on. Emphasize the individuality of every student with a disability. Explain what a stereotype is (for little kids, what constitutes disrespect), and make clear you will not tolerate it. If you don’t know your disability basics, educate yourself first. Google is your friend. 🙂
  • Teach your students how to respond if the disability disrupts class–say, if a classmate with epilepsy has a seizure. Emphasize treating the student with calmness and respect. Explain that if the student is conscious and cognizant, you should respond to his or her specific requests for help–or no help. For little kids, emphasize that the teacher or other adults should be the primary ones to handle seizures, tantrums, and so forth.
  • You may choose to assign a buddy that the PWD trusts to help with his or her needs. This is fine and can lead to real, deep friendships. But make sure the PWD has other friends and opportunities to make them. Don’t put the buddy in the position of acting like a miniature adult, or use him or her as a way to neglect your responsibilities to a student who needs you, sometimes more than the others.
  • If your students with disabilities are in a self-contained environment, still encourage interaction in “public” spaces–the cafeteria, the playground, electives. Teach students the basics of interaction: asking and remembering the person’s name, talking directly to the person rather than an aide or caregiver, focusing on topics other than disability. Special ed teachers can be allies here.

Disability is a difference, and it’s something we should all educate ourselves more about. But when you’re educating yourself or your students, remember that everyone in your school is on the same team. The team works and plays much better together.

Announcing a Brief Hiatus…

Hello readers,

I’ll be traveling from tomorrow to the 27th, so I’ll be on hiatus. In April, look for the following posts:

-What’s so horrible about autism, anyway? (in honor of Autism Awareness Month)

-How PWDs can and should enjoy fun, nostalgic “childish” things without being pigeonholed as perpetual children (a quick fun post since I love nostalgic stuff)

-More posts on disability and the faith community, in the tradition of last year’s April posts. (Possible topics: how PWDs who struggle for independence, financial and otherwise, should deal with the church’s teaching that autonomy can lead to pride and disrespect for God; how PWDs can respond gracefully to flawed and outdated theology and language; PWDs and the idea that disability is a gift/singles them out for “special kingdom work.”)

-Dealing with the Disability Superpower myth (the inverse of, “You’re brave for walking down the block.”)

And more as the year goes on… 🙂

What Place Does Inspiration Have in the Life of a PWD?

Hello readers,

I don’t have a catchy title for this post. I tried to come up with one, but the question says all it needs to by itself. What place does inspiration have in your life if you have a disability, and what do you do with it?

As we know, people’s attitudes toward inspiration has tainted it for persons with disabilities. We’ve talked a lot on this blog about inspiration discrimination, where PWDs are used for the media’s gain or where PWDs are lauded as inspirational for doing things other people do every day (“You’re so brave to go out in public!”) Examples like these can make you feel like you never want to hear the word “inspiration” again. I know because that’s how I feel. It can certainly make you feel like you never want to be called an inspiration. It seems that in today’s world, inspiration has been reduced to a form of sugar-coated, well-meant, and sometimes condescending exploitation. It’s the temporarily able-bodied population’s way of dealing with disabilities from a distance so they don’t have to get involved, get messy–truly know and understand the person whom the disability is only part of.

Yet are we being fair to inspiration? Can it be a good thing, and if so, how can PWDs and their temporarily able-bodied counterparts turn it around? Should we even try?

I believe we should try and that inspiration can be good. Part of that comes from my occupation as a writer. I talk about being inspired to write novels, novellas, blog posts, even Facebook posts. Writers go looking for inspiration–their muses if you will–when they get stuck. A written work, a piece of art, or a song is described as “inspired” if it stirs great feeling in the person who encounters it. In many religious circles, “inspired” or “inspiration” is a high compliment because it means whatever you’ve said, done, or made comes from and is approved by God. Second Timothy 3:16 tells us that Scripture is “God-inspired” or “God-breathed.”

The origin of the word “inspiration” is from an Old Latin word, inspiratio. That comes from the verb inspirare, which was translated down through Old French and English to become our words “inspire” and “inspiration.” “Inspire” means “to fill someone with the urge or ability to do or feel something, especially something creative.”

Here’s the cool part: a secondary definition of this word simply says “breathe.” Did you notice the “spir” in the middle of “inspiration?” Yup, it’s where we get words like “spirit,” or “respiratory.” See the connection? “Inspiration” refers to the spirit–the breath, the passion, inside of you that drives you to do and feel great things and to create. Whether you believe in God or not is none of my business, but I will put it this way: “inspiration” is a divine breath on you that allows you to do, feel, and create on a level beyond what humans normally experience.

So essentially, inspiration is evidence of the divine. It is one of God’s signs that He is with us, that He sees us and wants us to interact with the world and spread good news and goodwill in a world that is extremely dark. So then how can inspiration be bad?

As we’ve discussed, inspiration becomes negative when it’s twisted for other people’s agendas or when it’s misappropriated to make people feel less than human. One would think that, with its superhuman quality, inspiration couldn’t make you feel less than human. But how do you think little Phillip feels when somebody walks by him and says something like,

“Oh, Phillip, I love that you play soccer even though you’re blind. You’re such an inspiration to us all.”

Or when Chavah, who happens to have a prosthetic leg, plays the violin beautifully and somebody says,

“Your playing is such an inspiration, Chavah. You remind us not to give up on our dreams just because life is hard.”

Okay, yes, those things are probably true. It’s also difficult for a PWD like me to know what to say to those comments because others really are trying to be nice. I’d a thousand times rather be called an inspiration than a cripple or a useless eater. The problem is, constantly being called an inspiration puts positive, but unrealistic expectations on the person with a disability. I don’t know about you, but there are days I don’t feel like inspiring anybody. There are days when, just like the rest of humanity, I want to lock myself in my room with M&Ms and a bunch of Touched by an Angel or Monk reruns and tell the world to go suck an egg. (Insert your favorite TV binge and snack here). And I’m sorry, but unless it is truly all you can do, feeding yourself, dressing yourself, and taking care of your own bathroom needs is not inspiring. It is NORMAL.

So, what should PWDs and their temporarily able-bodied contemporaries do with this phenomenon called inspiration? As I said, I don’t think we should chuck it out the window. Inspiration is good at its core. So what we should do, I think, is get rid of all the connotations and implications we’ve attached to it and get back to the core. That is, yes, allow PWDs to be inspiring. Tell them they are inspiring. But let them inspire you based upon strengths, gifts, and innate positive traits–not because of what they don’t have and the “brave struggles” they’re allegedly experiencing. Praise Phillip, Chavah, and kids like them for the soccer and violin-playing, not their ability to cope with life. Coping with life is just part of living. If you handle inspiration this way, you will send the message that PWDs have strengths, value, and a place in your society–whether that’s society at large or on a smaller scale like your school, house of worship, or club. I think that’s a much better message than one that says, “You were created to be a mascot, to show people that they can be perfect and perpetually happy if they only try.”

With that: whether you have a disability or not–go inspire someone today. If you’re having trouble, ask the divine for help. God will invigorate, inspire, and fill with life all who ask.

Blog Bonus: Things PWDs Are Tired of Hearing

Hi readers,

Because I started the last post on February 27 but didn’t get it done until March 3, today I’m giving you a bonus round.

I got the idea from surfing around Buzzfeed.com. If you don’t know, it’s a site filled with news articles, fun lists, and fun articles about topics that most people find fascinating at some point or another. On the same day, you might find an article about Women’s History Month or Benjamin Netanyahu’s historic speech from yesterday–in the same place you find an article on 20 reasons to watch a certain Disney movie. Buzzfeed.com also does a lot of culturally-based posts. These include what I call the “tired of hearing” posts. They have titles like:

-Things Black Men are Tired of Hearing
-Things Latinos are Tired of Hearing
-Things ’90s Kids are Tired of Hearing
-Things Indian Women are tired of hearing (BTW, that’s as in, from India, not “Native American”)
-Things Jewish People are Tired of Hearing

And so on and so forth. But you guessed it, there is no, Things People with Disabilities are Tired of Hearing! Now occasionally, you’ll see something like, 20 Things You Shouldn’t Say to a Deaf Person, but those are rare. So today, I give you a list I hope you’ll like.

Things People with Disabilities are Tired of Hearing:

1. You can’t do that. Yes, sometimes we can’t. For example, it’s a given that people who are legally blind can’t see well or at all. But this is mostly applied to normal things that temporarily able-bodied folks do all the time, so to say this is an assumption and a clue that you haven’t thought outside the box.

2. You’re such an inspiration! Usually applied to us when we do much more than breathe. While inspiration can be a good thing, it’s not our sole purpose and constantly saying this makes us feel really awkward.

3. Do you need help with that? Not unless I ask, thanks.

4. Yeah, there’s a wheelchair ramp. You’ll be fine. News flash: We do not all use wheelchairs. Yet, this continues to be the first and often only thing people think of when they hear “disability”–thus the only thing for which modifications are readily made.

5. You don’t look disabled Uh, how am I supposed to look?

6. “Retard” and “spastic” are just words So, are you also saying I’m free to call people racial and ethnic slurs because they’re just words? Did not think so.

7. That’s not discrimination. Okay, I don’t know who came up with the rules about disability-based discrimination, but if you ask me, way too many people are getting away with it (more on that in a post down the road). PWDs get claims thrown out all the time because people think it’s okay to bar them from events, schools, and jobs with the excuse, “We can’t modify that/he or she is not capable.” Just stop it. I’d like to find every one of you people and punch you in the face.

8. We’ll put you on a waiting list. AAAAARRRRRGH!

9. I don’t know how you do what you do. I’d kill myself if I had to live like that. Do you realize and/or care that you just implied I’d be better off dead?

10. Well, at least you’re not ___ (fill in alternate disability here There is a “disability hierarchy” present in this country where the more “normal” you can act, the less of a big deal your disability is supposed to be. I guess that’s where we got concepts like high- and low-functioning (although I’ve never heard of medium-functioning; where does that fit)? I understand the purpose of trying to delineate between disabilities, but really, it’s a labeling game that I wish we could wholly get rid of. When people say stuff like this, it shoots other people down no matter what their disabilities are.

11. We all have things about ourselves we don’t like. Yeah, because my cerebral palsy, multiple sclerosis, autism, whatever, is exactly like your big nose or your extra 10 pounds.

12. We all have disabilities. No, “we” don’t. Check the June 2014 archives for more on that issue.

13. Why can’t you do X? If I want to explain it to you, I will. But when I need help in an immediate situation is not the time to ask this question.

14. But you’re so smart! Honey, if that’s your first reaction, you need more help than I can give you. Move along.

15. I know somebody else with ___ (insert disability here). Good for you. Now you know two of us. And no, I do not necessarily want to meet that person, just like an Asian person doesn’t necessarily want to know every Asian in the world.

16. Can you have kids/sex? Can YOU?

17. What happened/What’s wrong with you? Again, I will explain it when I have to but I don’t like talking about it 24-7. As for the second incarnation of this question, what’s wrong with you? Because you know, we all have disabilities, snark, snark.

18. Who do you live with/Who takes care of you? Are my living arrangements truly your business?

19. Will you get better? Probably not, and for the most part, that’s okay. Asking me kind of makes me feel like I should want to be cured.

20. __________________________________

I left #20 blank to show the last thing we’re tired of hearing: silence. Sometimes, at least for me, it seems like when people know all they can about my disability, they walk away, or the friendship otherwise fizzles. Don’t do that to me–to us. Ask us normal questions like what we like to do, where we work, where we want to go to dinner. It would mean a lot.

Too “Normal” for Help? The Unique Situation of High-Functioning PWDs

Hello, readers,

We’re going to end February with a post I’ve been anticipating, one that talks about high-functioning PWDs and the unique situations in which they find themselves. This post is highly personal because I am a high-functioning PWD. Yet, I hope it will speak to other people as well because mild disabilities and high-functioning individuals are all over America–all over the world. They need and want the same attention their counterparts receive, but it can be difficult to come by. So the purpose of this post is to raise awareness of their situations and hopefully give them encouragement so they can cope more effectively.

What is a High-Functioning PWD?

These days, “high-functioning” is often a term connected exclusively to autism. However, other disabilities are considered high-functioning (HF) as well. For the purpose of this post, I will define HF using a few components. A person with a disability is high-functioning if he or she:

-Has an IQ above 70-75 (defined as mild cognitive disability)
-Consistently exhibits adaptive and social behavior consistent with or above chronological age (i.e., a five-year-old who speaks and interacts at a level expected of a typical five-year-old, either with mouth or assistive technology; a twelve-year-old who can understand and respond to a typical sixth grade school curriculum and can conduct him or herself well in social situations, as expected of a twelve-year-old)
-May have physical challenges but understands limitations, expresses typical desire to improve them, and improves to certain points. Physical challenges do not influence cognitive abilities or development.
-Articulates needs, wants, and feelings on a level expected of chronological age through voice or assistive technology
-Shows interests appropriate to chronological age OR a level of interest beyond chronological age (a hyperlexic person with cerebral palsy, for instance, or a person with high-functioning autism who loves Disney, but also deeply analyzes its characters, plots, and how the conglomerate fits into the business world).
-Understands what is expected of typically developing peers (to grow up and go to college or tech school, to live outside Mom and Dad’s home, to have friends and a spouse or partner) and expresses both the desire and the ability to do these things, to varying degrees. Example: a high-functioning individual with Down Syndrome may not want to go to Yale, but he or she might certainly want to attend a smaller or technical college, and might well be ready to live independently by an age close to that of typically developing peers–say 18-22).

This might seem like a long and convoluted definition, but I am trying to express what it means to be HF without leaving out anything or discounting anyone’s experiences, needs, or wants. To boil it down: HF individuals are cognitively on a level at or above typically developing peers and can be expected to meet many of the same milestones as peers.

One would think that high-functioning people are some of the easiest for traditional disability services to reach and to serve. Because they have fewer needs in some, most, or all “life skill” areas, they should be able to access the services they need to reach their full potential, yes?

Unfortunately, the answer is too often “no.”

This is where this post gets a bit personal. Some of you might remember I’ve told you a little bit about mild CP’s pros and cons, such as:

-Being seen as capable, but essentially being accused of lying when people found out, I actually needed help they didn’t expect or want to provide
-Having few or no academic issues, but not being able to cut a steak or tie shoes
-Explaining my personal goals over and over again, with little or no response from the people in my area whose job it is to serve PWDs.
-Not having my own home – in my very late twenties – and experiencing crippling isolation and self-doubt

While my experience isn’t the same one as all high-functioning PWDs, I would venture to guess many of us have similar ones. But why is that. when we are the ones seen as having the “most potential” of the population of persons with disabilities? (I put that in quotes because some high-functioning persons do not use their potential and because people with other degrees of disability have plenty of potential, too). The reasons are as myriad as the experiences, but there are some common ones. High-functioning persons may not reach their potential because:

-Their gifts are not served at school or work; they’re taught, consciously or not, that their disabilities come first or only
-Their hometowns do not have adequate services
-Disability service organizations as a whole, including special education, vocational rehab, and so on, experience a lot of turnover and burnout, making it more likely for programs to be streamlined or declared defunct (see recent post for more on programs).
-The services that do exist have been geared toward more severe disabilities for so long, service providers don’t know how to help high-functioning people. I’ve heard this a lot. I understand it, but I consider it a frustrating excuse. For example: I would love to move into an apartment with female, high-functioning roommates, kind of like a sorority, if having my own home wouldn’t work out. No such place exists. My alternatives are substandard housing or group homes whose residents’ goals include life skill and behavioral improvement. Nothing wrong with living in a place like that if you need or want it, but if you don’t…ugh.
-The biggie: people mistakenly think that high-functioning individuals do not need help or are making excuses. This is perhaps the most frustrating reason of all, especially when the people using it also imply that high-functioning PWDs are snobs. As in, “If you think you’re too good for a behavior plan and a job at X Menial Company, you don’t deserve help!”

Frankly, the temporarily able-bodied population thinks high-functioning individuals are too normal for help, yet too disabled to be accepted. It’s the biggest catch-22 I’ve ever seen, and I want it defunct. Dead. How will that happen? As with a lot of things, I’m not sure. But I know two things: I’m not the only high-functioning PWD out there who’s frustrated, sad, and just plain mad because of this, and I want to help. Do you? If you do, reach out to your community and the PWDs around you. Explain, through speech, assistive technology, letters, petitions, whatever:

Moderate and severe disabilities need services. We are glad those services are there and glad they are improving. But a different group is being underserved or at worst, completely ignored. Notice them. Listen to them. Help them reach their goals and dreams–because they may be some of your best ambassadors to the world of disability.