If We Were in Charge of the World: What Would Happen if PWDs Were the Majority?

Hello, readers,

After last week’s MLK Day post, I started wondering what to write about next. One of the things that came to mind was a poem I read, and wrote one in the style of, in third grade.

Back in third grade, language arts didn’t have much room for creative writing time, so a guest teacher came to our class a couple times a week to teach us the wonders of poetry, stories, and more. That’s how I met the woman who would later become my fifth-grade teacher and who would help start me on the road to a career as a “real writer.” Bless her, this sainted woman, Ms. B, would also put up with my overblown similes and metaphors, my descriptions that read like they escaped from Hallmark cards, and my elementary school philosophy that as long as the content was good, who cares whether paragraphs were indented or not? Thanks again, Ms. B.

Anyway, one of the activities we did in her third grade workshop involved reading a poem called “If I Were in Charge of the World” by Judith Viorst. It’s a great poem–here’s a link:

http://www.poemhunter.com/poem/if-i-were-in-charge-of-the-world/

As you might guess, we were then asked to write our own poems on the theme of what we would do if we were in charge of the world. Now, I don’t remember much of that poem and I know it wasn’t all about disability. I do remember I mentioned physical therapy in the “I’d cancel” part, but that’s all. It was mostly about eating chocolate for breakfast, reading books all day, things typical third-graders think about. If you ask me, that’s how it should be. Because if a kid with a disability, given charge of the world, could only say, “Well, I’d cure my disability/get rid of all these disability-related things,” then we’ve got bigger problems than who’s in charge of the world. I guess the problem is, how we’re running the world.

But then again, what would happen if people with disabilities were in the majority? Rather than explain in words, I have another link for you. It’s a video that imagines exactly that:

Pretty powerful stuff, eh?

Now, I’m not saying PWDs need to be in the majority to be understood. In this world, there are always going to be majorities and minorities no matter who’s in charge, and if PWDs were in an overwhelming majority, temporarily able-bodied people might face the same issues PWDs have to put up with today–being treated like they’re not normal, being placed in jobs and housing they neither asked for nor wanted, being expected to appreciate second-class treatment and even thank others for it because hey, they’re lucky they even get to live among us! We could just call them useless eaters and lock them in jails or institutions–is that what they want? Oy, would we be in trouble. You know what they say: absolute power corrupts absolutely, and the TAB population has already proven it hundreds of times over the centuries. I wouldn’t want to be a person with a disability who helped prove that my people group could do it, too. As far as I know, there may already be some out there–PWDs are capable of being jerks or even sociopaths just like the rest of us.

That being said, I think PWDs and the temporarily able-bodied population should work harder to make sure everyone gets a shot at being in charge of their own world as much as possible. To that end, here’s a poem:

If I were in charge of the world, I’d cancel diseases, unnatural therapy, calories, and also weather above 75.
If I were in charge of the world, there’d be more attention paid to cats, “book days” instead of sick days, and a new holiday to add to that slump between Christmas and New Year’s.

If I were in charge of the world
You wouldn’t have “retard”
You wouldn’t have “special education”
You wouldn’t have “behavior plans”
Or, “Meet this goal to prove you can be included”
You wouldn’t even have goals.

If I were in charge of the world
People with disabilities could make friends as easily as anyone else
Everybody would quit arguing over religion and what Jesus really said
And a person who sometimes forgot her purse
And sometimes “forgot” to go to the gym
Would still be allowed to be
In charge of the world.

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Dreams and More: Is Disability a Civil Rights Issue?

Hello, readers,

Today we celebrate the birthday of Civil Rights leader Martin Luther King Jr. Although in some circles this has been reduced to a good excuse for a day off work, it remains an important day to commemorate civil rights for all and the human spirit’s beauty and dignity. A quick disclaimer: I am a white woman. I don’t have any African-American blood inside me, and although I am 1/16 Cherokee, I would not consider myself a Native American. So I don’t know firsthand what it is to be discriminated against and thought less of due to skin color. However, I do know what it is to belong to a people group struggling for civil rights.

There are those who claim disability is not a civil rights issue and that those who say otherwise are deluding themselves. Some of these people are written about in Mary Johnson’s book Make Them Go Away. The general thought process is that because persons with disabilities cannot access certain buildings, cannot perform certain jobs, and cannot walk, talk, move, eat, or go to the bathroom in the same way as every other person on the planet, they should not complain that the world is not built around them. There is also a thought process that says, people with disabilities already have equal rights because unlike skin color, their disabilities can be helped or fixed. If they would just get up off their lazy butts and exercise more, work harder to walk and talk, work harder to read, and learn to clean up after themselves, they’d be equal. They shouldn’t expect the rest of us to cater to them.

Two thoughts on that. One, it’s a bunch of baloney, and two, that’s essentially what we used to say about blacks. If they would get better educations and learn to act like white people, they could be equal, right? Wrong! So why do we continue to insist things should be different for PWDs?

Martin Luther King Jr. had a dream. Parts of it have been accomplished. Parts of it we are still waiting for, because human nature is to judge, to put down, to harm, and to kill. Parts of it have been misrepresented or twisted to fit other people’s agendas. But we’re a lot closer to his dream of equality based on skin color than we used to be. If you can walk down the street and no longer see “Colored Entrance” on buildings, if you have dark skin and can vote without taking a bizarre literacy test, if teachers and principals warn parents about racist material in textbooks and reading assignments–that is progress. Not enough in a lot of cases, yes. But progress.

I have a dream, too, and I want to examine the progress we’ve made toward it. As you might guess, the dream is to see PWDs treated as equal to their temporarily able-bodied peers. To see them judged not by the limb that is missing, the mouth or eyes or ears that work differently, the tasks they cannot complete, but by the tasks they can complete, the talents they possess, their character and integrity, and their hearts.

In a lot of ways, we’re already there. Back in the 1920s, for example, a boy who used a wheelchair was denied access to public school because “his presence would depress and nauseate the other children.” In the 1940s-’60s, it was not only commonplace but considered completely normal to immediately institutionalize, for life, any child born with cerebral palsy or Down syndrome, degree of severity notwithstanding. We didn’t even have an Americans with Disabilities Act or an Individuals with Disabilities Education Act until the 1990s. Many schools are moving from segregated special classrooms to partial or full inclusion. Transportation workers who deny PWDs access to their vehicles are disciplined for it. Universal design is slowly becoming considered in more housing options. We’ve come a long way, but we’ve still got plenty to do.

A Texas mother was offered eighty-six thousand dollars to keep her son with autism out of school.
A woman with a physical disability named Ellen Nuzzi was called selfish for wanting to ride a public bus.
Persons with disabilities in New York have to ask kiosk attendants for bathroom access in public, open spaces such as street fairs–and that’s if the attendant even bothers to show up.
People with disabilities are regularly discriminated against at work, placed on arbitrary discipline plans, and fired.
High school graduates with disabilities are maligned because their “life skills curriculum” offered little to no preparation for real-world experiences.
In foreign countries, children with disabilities are kept in cages due to “behavioral and emotional issues.” They are left chained to bus stops during the day because no one is available to care for them.
Some adults with disabilities are America’s slaves. Why? Because they are placed in sheltered workshops, forced to make widgets or pack boxes, for no pay or sub-minimum compensatory wages (compensatory to the supervisor, not them)

People with disabilities are still placed in corners. They’re told to sit down, shut up, do menial work, and accept the crumbs society gives them.

Sound familiar?

Celebrate civil rights today. As you do, please join me in continuing to raise awareness. Disability is a big civil rights issue. It’s time we came out from underground, turned traditional thinking on its head, and kept working to finish the movement. Will it ever be finished? Sadly, probably not. But we can make great strides while we’re here.

R-E-S-P-E-C-T: How PWDs Can Learn to Respect Selves and Others Through Self-Advocacy

Hello readers,

Last week, I promised to do a post on self-advocacy, so here it is.

One of my most frequent readers recently told me he and his spouse are looking at adoption and may end up adopting children with disabilities; therefore, he enjoys this blog because it gives advice on how to deal with issues unique to having a disability and being the loved one of a PWD. However, I recognize that not everyone who reads this blog understands the exact ins and outs of common issues. For example, self-advocacy may seem like a great idea, but how does one go about teaching it and achieving it? What exactly does IDEA say and how can loved ones of children and teens with disabilities be sure this law is followed? What is an IEP, really? We’re going to deal with some of these questions this year in what I’ll call “primer posts.” Our first topic, of course, is self-advocacy.

Q: What Is It?
A: In its simplest terms, I think of self-advocacy as R-E-S-P-E-C-T for self and others, within the context of a disability. (Aretha Franklin had a great point). In other words, self-advocacy means if you have a disability, you’re able to treat it as a natural part of life and preserve your dignity while living with it. You’re also able to express needs and wants, feelings and questions, in a way that shows respect to others. This is key because a lot of misguided idiots still believe PWDs are at their core selfish people, and that self-advocacy only encourages self-absorption. Neither of these things are true, but it’s an easy trap to fall into, especially as kids get older and learn that the world doesn’t revolve around them. So in addition to respect for self and others, self-advocacy also involves confidence–the confidence to say, “I have wants and needs, and I have the right to express those in a productive way. That does not mean I am self-absorbed or a bad person.”

Q: When Should It Be Learned?
A: The short answer? ASAP! The long answer is, self-advocacy is learned in pieces throughout life. The way a four-year-old with cerebral palsy self-advocates is not the same way a twelve- or sixteen-year-old will because they each have different vocabularies, understanding levels, and needs. Let’s break this down, shall we?

  • For a young child (2-5): Explain his or her disability in ways he or she can understand. Highlight the fact that the disability may make him or her different in some ways, but that PWDs are more like their able-bodied peers than unlike them. Use props or books such as some of the ones for young readers we talked about over Christmas (Fanny, Memily, Moses Sees a Play, Susan Laughs, I Can, Can You, and so on. Teach young children how to say things such as: “Yeah, I can’t walk as fast as you, but we both like ___” (Ninja Turtles, the cookies at snack time, the color blue). If your child is teased, teach him or her the same responses you would for a child without a disability: “It’s not nice to call people names,” “Stop that,” “That hurts my feelings.” Teach your child how to ask for help from teachers, other adults, and friends when he or she needs it–politely and without apologizing for needing help.
  • For elementary and middle school kids (6-13): This is a good age because your child can start researching his or her disability, first with help and supervision from adults and later independently. Teach children how to explain the disability in an “elevator pitch”-type format–one or two sentences or so. Begin teaching children the difference between a curious question (“Does having Tourette’s hurt?” “Can you color or write with a prosthetic hand?”) and a rude question (“Learn how to feed yourself yet?”) Emphasize that curious questions can and should be answered in a casual, conversational way. Encourage children to be social with temporarily able-bodied classmates, but also to get to know other kids with disabilities, particularly ones that are different from their own. Emphasize that someone might have the same disability as you, but a different manifestation. If you have met one person with Down Syndrome or autism or whatever–well, you’ve met one person.

    This may also be the age where kids start having conflicts with teachers or administrators over what their IEP says vs. what the school is willing to do, or his or her needs and wants vs. what the “experts” think is best. As a parent or guardian, your role is to be the advocate for things like IEPs. Stand up and say, “You told me Oliver would get extra time on tests because of his learning disability–why has this not been done?” If the school says, “But we’ve never done it this way,” don’t accept that as an excuse; find people who will work with you to provide what your child needs. If a therapist or other expert says, “Your child needs to be in special ed/the best she can hope for is group home placement/real jobs are not realistic,” then you have to be the advocate and push for better answers.

    However, there are some ways in which a young child can self-advocate in these areas as well. Part of that involves telling you when a problem becomes too big. Teach your child what this means. It doesn’t mean, for example, tattling when the teacher says, “Elizabeth, let’s have you try tying your shoes today.” It also doesn’t mean refusing to do what therapists, doctors, or teachers ask if what they ask is reasonable and relevant. But it does mean speaking up. If, for example, a teacher says your child has to go to the resource room during a part of class he or she likes, it’s perfectly okay for the child to ask permission to stay. If the P.E. teacher is pushing your child to do something that doesn’t feel safe or that his or her body can’t do, it’s not only okay to speak up, it may be a safety issue.

  • High school and beyond: This is where advocacy starts to move out of the parent or guardian’s hands and into the young adult’s. High-schoolers will be invited to attend their own IEP meetings and discuss what they want to do after school ends (post-secondary education, workforce, military, whatever). Young adults should know how to:
    -Explain disabilities in terms they can understand, in a fairly detailed manner, as is appropriate.
    -Communicate their dreams and personal goals
    -Talk about what “transition” means for them; where do they see themselves in five years?
    -Delineate between what they do and don’t want

    Teach your young adults how vital it is to speak up for themselves. Show empathy; IEP and other meetings can be intimidating. Reassure your young adult that you are still there as a facilitator and a resource, and that you and other experienced adults can and will help if things start to get confusing or overwhelming. Help your child sit down and discuss, with you and other trusted individuals, what his or her dreams are. With help from trusted experts, make actual plans to reach those goals, and make them measurable (i.e., “Be in an apartment within one year of graduation,” not just, “Be in an apartment.”)

    Young adults often get overwhelmed and frustrated because at this stage, they’re often seeing the details of the ugly realities in Disability World. For example, they see that services are slow, waiting lists are long, and some “experts” just don’t care. They see years passing without much change, and fear takes over. Help head this off as much as you can, using strategies like the ones we discussed last week. Teach your young adult that it’s okay to be frustrated and to express that frustration. If needed, you and your young adult can write letters to service providers together; if the service providers won’t budge, go over their heads. For example, I’ve been through 4 Voc. Rehab counselors in 10 years, only one of which did anything worthwhile or saw me as a person. I’m considering writing my Congressman.

    Q: What if My Child Can’t Communicate?
    A: This is a valid point. Some PWDs have communication disorders, or their disabilities are so severe that self-advocacy may look very different from what I’ve outlined here. But DO NOT give up! Every PWD, without exception, needs some form of communication, whether that’s a picture board, sign language, a keyboard, whatever. Many people with severe disabilities may still need a secondary advocate like a parent or a trusted friend into their adult years. Provide them with that, but don’t project your own wants onto them. Truly be their voice, by expressing what they would want or need. If at all possible, let the PWD help decide who the advocate will be. For example, most of us love our parents, but we do need independence from them. Help your child find friends who can be advocates from a young age onward.

    Self-advocacy seems simple, but it has a lot of nuances some people don’t know about. It’s also vital to make self-advocacy a real possibility for PWDs of any age and any level. So, go forth and advocate today!

  • A True New Year: Some Tips to Help This Year Be Different for Young Adults with Disabilities

    Happy New Year, readers!

    I hope everyone had a wonderful Christmas, Hanukkah, and Kwanzaa, and enjoyed ringing in the New Year with family and friends last night. My New Year’s Eve consisted of hors d’ouerves, chatting, and watching the ball drop with in-laws, complete with sparkling grape juice.

    A new year also means a new crop of posts here at IndependenceChick. This always makes me think of persons with disabilities this way: how many of them make resolutions? How many of them hope that in 364 days, they can say their lives are different and better from what they had before? I know I do, and I’m betting most others do, too.

    Today, I’m going to focus specifically on one group that I will argue needs the New Year to be different more than perhaps anyone else: young adults who are “transitioning” from high school to “the real world.” We already know the pitfalls of this; often, transition becomes more of the same, with the only thing that changes being, the PWD’s chronological age. I’ve endured that for ten years and let me tell you, it sucks. So the question is then, what can we do to ensure transition doesn’t suck? I’m going to offer a few tips–resolutions, if you will. Here we go:

    Resolve To Prepare. Too often, the school system waits until a young adult is 14 or older before discussing “transition plans.” To a point, I understand this. Until they’re young adults, kids with disabilities may not fully grasp the implications of IEPs, 504s, and other plans. Yet, this doesn’t mean they shouldn’t be barred from all participation. As disability advocate Kathie Snow says, “Nothing about me, without me.”

    Am I saying a five-year-old should be dragged into an IEP meeting? No. But I’d like to see preparation for transitions made earlier, and on smaller scales. For instance:

    • Parents: explain the IEP or whatever plan you use in an age-appropriate manner to children as soon as you have them. Assure your child that he or she has rights in the educational system and community, and that you and their teachers and adult supporters are there to enforce those rights.
    • Teachers: Work with parents and students on miniature transitions. For example, help a child moving from elementary to middle school, to transition effectively. Same for middle to high school. Instead of a simple shuffle to the next special ed room, advocate for the least restrictive environment. Help students learn with typically developing peers. Focus on the fun aspects of the new school, not just “better behavior is expected of you…you must act ‘less disabled’ here.”
    • Young adults: Self-advocate. We’ll discuss what this means for individuals and how to do it effectively later. If someone mistreats you, speak up. If you want something different from the services offered, get the help you need to make that clear. It’s your life–embrace it.
    • Parents/young adults: As much as possible, explore services together. The need for vocational rehab counseling is not an excuse for the PWD’s nonparticipation in finding his or her own job. The need or desire for an out-of-home placement is not a license to place a PWD in the first arrangement you see.

    Resolve to Anticipate. Every PWD has a present and a future. Often, the past may have been disappointing or just plain horrible. Parents, teachers, friends, and young adults themselves: resolve to let it go. (I had to go there). 🙂 Resolve to say to yourself: this is how I will make this year different. I am worthy. I am capable. I can do things! Even if the services are minimal and people are telling you to give up, focus on affirmation, not destruction. If you have to, ditch the existing services. Which brings me to:

    Resolve to Live a Real Life. Is your home a therapy clinic? Is your schedule crammed with specialist appointments and meetings? Here’s a blunt truth: if that’s what life looks like when your kid is 6, it’s what his or her life will become at 16. By 26, he or she may come to believe, my life is about meetings where I am discussed, but not helped. People talk, but they don’t do anything. Listen up: talk’s cheap. Put some feet to it. Maybe it starts small–replacing one therapy with fun outside, playing catch with Dad. Or instead of yet another meeting to discuss why Jane isn’t meeting her IEP goals, the goals need to be changed. Instead of yet another attempt to get your child with autism to eat something besides crackers and applesauce, perhaps you can slowly phase out those foods using ones similar in color and texture. Parents magazine has a great article on this particular issue called “Picky Eater Rehab.”

    Resolve to Work Together. Parents of kids and young adults with disabilities are encouraged to embrace goals from an early point in the PWD’s life. The issue is that much of the work lands squarely on the shoulders of the PWD, and no matter the goal, that can be intimidating. Instead, find ways to meet goals together once they are set. For example, if Logan’s goal is to improve his penmanship, maybe Mom and Dad can find fun ways to do that–playing Cranium or Scattegories instead of sitting in a therapy room practicing letters. If Nora, who is dyslexic, decides her goal is to read Divergent like her friends, great! Start off small, but not with books two or three steps below her grade level unless absolutely necessary. Instead, start with books in the same genre, but shorter, or with easier vocabulary. Use books on tape. Teachers, encourage oral or other modified English assignments.

    Note however, that as PWDs age, the goals may get less concrete. A grown child’s goal to find a spouse may seem daunting to a parent, but you can still work together. Help your young adult find social engagements he or she will like, ideally with a mixed group of persons with and without disabilities. If appropriate, discuss online safety and help set up an online dating profile. Discuss marriage and living with another person in a natural way, not, “Do you understand that marriage means you have to ___, can’t ___, should make the goal to ___?” I mean, readers, how would you feel if your spouse came up to you and said, “You’re not meeting your laundry goal. Let’s write a goal–you will put the clothes in the hamper on 5 out of 7 days with 90% accuracy?” Please!

    Let’s make transition real this year–by making it different. See you soon with a new post on self-advocacy: what it is and how it can be accomplished effectively at different ages.