Monthly Archives: October 2015

Okay, Hi. Yeah…So…What?

Hi, readers.

Yup. That’s it. That’s the end of today’s post.

Just kidding. That would be kinda disappointing, wouldn’t it? At least, I hope it would.

Yet, the Cerebral Palsy Foundation seems to be unconsciously sending the message that conversations with people who have CP and other disabilities can start and end with “hi.”

If you don’t know what I’m talking about, the Foundation recently put out a video that explained there is no “secret” to starting a conversation with a person who has a disability. Just say hi!

On the surface, I agree with that. There’s no secret to talking to me, or anybody else with a disability. You don’t need an eighteen-week college course. You don’t need a foreign dictionary. All you have to do is say “hi.”

But then what? The video doesn’t tell us.

I got the idea for this post after I saw another blogger’s reaction to it. This young woman also has CP, and the title of her post was, “Don’t You Dare Just Say Hi.” She explains that, like me, she understands that the CP Foundation was sincere in its intentions and was trying to be positive. She explains that like me, she is not angry with them. But she and I both have a big problem with what Just Say Hi may be conveying. Here are a few key problems:

“Just say hi” automatically presumes that people need to be taught how to talk to PWDs. Again, on the surface, I get that. It can be intimidating to talk to a person with a disability. I find myself in that position because I don’t encounter other persons with disabilities on a conversational level very often. (Which tells me there is a dearth of inclusive opportunities where I am, but that’s another issue). I often feel unsure about how to approach another person with a disability, especially if that person’s disability is intellectual, because I don’t want to be seen as patronizing or say the wrong thing. But not approaching them is just as bad, so I do approach, and I do have a conversation.

See, that’s the problem. On the surface, I get why people without disabilities find them intimidating. But we need to go beyond the surface. We don’t need to be “taught” how to talk to PWDs. I mean, think about it. Does “just say hi” work when applied to blacks, or Asians, or LGBT individuals? No–heck no! It’s insulting. As the other blogger put it, it makes the other person look “foreign…[like] ET.” For crying out loud.

“Just say hi” is patronizing. The other blogger, who you can find at The Girl With the Barbie Feet, put it this way. “I am not an inspiration.” “I am not here to be your good deed for the day.”

Yet, how many times are conversations with PWDs treated like this? People walk up to us and say “hi,” or “how are you,” and then once we answer, they leave. Whew–they’ve done their good deed for the day! They feel better about themselves now. They’ve made a disabled person smile–they’re so heroic!

Really? Gag me.

This is exactly what “just say hi” presumes: that people with disabilities are here exclusively for others’ benefit. As in, if we didn’t make temporarily able-bodied people feel good about themselves, if we weren’t always available to be human good deeds, what good would we be?

This really makes me sick, especially since it’s a pervasive attitude among my own people, Christians. Again, I am not picking on the church. But it’s about time somebody called Christians in particular out on this–and I’m talking to me too, because sometimes I’m tempted to say hi and walk away. STOP. Just stop.

Christians often use people with disabilities, consciously or unconsciously, to prove they are “showing Christ’s love.” People with disabilities are held up in churches or charitable organizations as the ultimate examples of inspiration and courage–but not much else. Guys, really? Hear this from a concerned sister, okay? If you’re using me to “punch your Jesus card,” don’t even bother. And if I weren’t a Christian already, your actions wouldn’t make me want to be one. Why? Because I’d think, “If that’s Jesus, He just pities me. I don’t need more of that.”

Just say hi shuts down real conversations. Often, this is because TAB people assume that people with disabilities can’t have real conversations. We can–sometimes it just takes more effort.

I read the comments on The Girl With the Barbie Feet’s blog. Out of 14 people, most accused her of missing the point of the Just Say Hi video, and of disparaging people with intellectual disabilities, because she mentioned that a lot of the people who do talk to her, talk to her the same way they do to people with intellectual disabilities–as in, like puppies or kittens or babies.

This young woman was also accused of being unrealistic. She wrote, “Ask me about my dreams and aspirations. Ask me about the change I want to make in the world. Tell me you like my hair or my shoes.”

A commenter had this to say: “Maybe I don’t have time to ask about your dreams and aspirations, or maybe I just don’t give a s#@!, like all the other a-holes out there.”

Well, at least the commenter was honest!

Look, I get it. Time is precious. Sometimes “hi” is all we have time for, and if it’s a sincere “hi,” that’s fine. If you don’t stop to ask me what I think the meaning of life is, I will not get offended.

But if the only thing you ever say to me is “hi?” If the only way you relate to me is as a disabled person whose life you must make better? I will get offended, and I will be hurt. Again: would you do this to your friends? Would you consistently do this to another minority? No.

So take a few minutes. Have a real conversation. To clean up that commenter: just, you know, give a rat’s rip what I think and feel.

Yes, please say hi. Then, let’s talk. If you’ve got a disability-related question, go ahead and ask me. Then ask me how my cat is doing. Ask me if I’ve read any good books lately (and this is an easy one.) Ask me for advice about something–you’d be amazed at how many PWDs don’t get asked advice, and how much good advice we have. Tell me about your kids, or your elderly parent, or your trip to the Grand Canyon. You can even tell me how excited you are that your favorite football team won the game. I might even ask you to explain football to me. (My dad tried once, but I probably need remedial courses).

“Hi” is great. Moving beyond it is even better. And the more often you say “hi” and have real conversations, the more comfortable you and I will both be.

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Blog Bonus: Healing Words

Okay, so after the last post I got to thinking: we talk a lot on this blog about what people shouldn’t say and how negative words impact people with disabilities and our perceptions of them. I don’t think we talk about positive, healing words enough.

So let’s say you’re a doctor, a nurse, a therapist, an expert in some part of disability, what have you. You face disability every day, and you know how stressful or downright demoralizing living with it can become. Maybe you even have to use some of the words we talked about because they’re medically or technically correct, or because no substitutes exist. How can you inject more positivity into your words? What are some good ways we can talk about disability?

I’m not a professional, but I had a few ideas. Even if your evaluation must use negative words to be technically correct, you can say things like:

“I want to help your child/loved one reach his or her full potential.”
“This is a projection, not a predictor of the future.”
“How can I help you?”
“What are your questions and concerns?”

You can also say, especially to the person with a disability:
“Tell me what your strengths are/what you like to do.”
“How would you like to complete this task?” This would work well in therapy. If the person must practice some life skill, give him or her choices on how and when, and how long, to do it. Many therapists unknowingly push goals and tasks when the person is already tired and frustrated.
“How are you feeling today?” Then listen to the answer. “Fine” is not an answer, and you need to build trust to get a real one.

When a PWD, his or her parent, or a loved one comes to you scared or discouraged, or says, “I can’t do anything!” say something like,
“I know it feels that way. What’s got you the most frustrated right now?”
“Look how far you’ve come.” Then name some things the PWD can do now that he or she could not before, no matter how small.
“You are, and will be, able to do more than you think.”
“What people do is not as important as who they are.”

If a treatment or a plan does not seem to be working, instead of giving up and saying, “He’ll never do this/be this,” say,

“Okay, now we know one way that doesn’t work. What should we do next?”
“I don’t know what to do; let me find someone who will know.”
“Do you have any ideas to help your loved one respond more effectively?”
“Why don’t we take a break from this treatment/plan/goal for a while?”
“What are we really trying to accomplish?” Sometimes, PWDs and their loved ones hang on tightly to a specific goal, like walking or talking or meeting some standard. If that’s to help the person reach his or her full potential, fine. But sometimes we must step back and say, “Am I doing this because I want to somehow ‘fix’ my loved one?” If yes, it may be time to stop.

If a PWD expresses anger or frustration, or tells you “no,” you could say:

“Can you tell me why you’re upset?”
“Okay, let’s cool down for awhile.”
“We can try this again later.”
“Show me how you feel.” This may be crucial for people who don’t communicate with their mouths; signing, drawing, or using assistive technology may help.

Things Every PWD Needs to Hear:

Really, these are things every person needs to hear, disability or not. But I don’t think PWDs hear them enough, because we’re so busy trying to fix them that we sometimes forget they are people. So here we go:

“I love you.” (Every day, people. EVERY. DAY.)
“Good job!” (This is a summation of the authentic praise PWDs should be receiving).
“You’re beautiful/handsome.” (Too many people, including PWDs, rarely or never hear this because people erroneously think disability is ugly).
“I’m proud of you.” (No matter what the accomplishment, say this).
“I’m sorry.” (This one is crucial. How many times do we do things to people with disabilities, in the name of working on them, without thinking about how they feel)?
“What do you need?” (Ask, don’t just jump in and help).
“What do you want/what would you like to do?” (How many TAB people order for persons with disabilities in restaurants, take them to activities without their input, and assume they have no real preferences? Stop it–and ask this instead).
“What are your dreams? If you could be anything, what would it be?” (Open the world of possibilities! Sadly, many PWDs have never been asked this question, so they don’t know the answer. If you teach a PWD, early on and throughout life, that they have more options than “special places” and sheltered jobs, they will believe it. Teach them to dream BIG!)

Go forth and heal today.

Sticks and Stones: The “Harmless” Terms of the Medical World

Hello again, readers,

I’d like to personally thank Kathie Snow for the idea for this post. She recently wrote an article entitled Comparison: The Thief of Joy. The article itself is about how harmful it is when people with disabilities, especially children, are negatively compared to their temporarily able-bodied peers.

I agree that comparison is harmful, largely because I do it to myself, often without quite realizing that I’ve done it or why I’ve done it. Everyone compares themselves to others at times, positively or negatively. We’re told not to do that; to paraphrase a 1970s quote, it can leave us “vain and bitter.” Yet, when people with disabilities are part of the comparison, especially a negative comparison, it’s deemed okay and even natural.

What I want to talk about today is why we think it’s okay to negatively compare PWDs to others, and the words we use when we do it. We all know that old playground chant about sticks and stones, and we know it’s a lie. Words hurt. They leave some of the deepest and sometimes irreparable wounds possible. You can staunch bleeding. In 1-2 weeks, most bruises go away. But words, unh-uh. I still remember some hurtful things said to me–especially the ones that people thought it was okay to say because of my disability. If we know that “sticks and stones” saying is a lie, why do we continue to throw verbal weapons at PWDs?

Kathie Snow points out a lot of the words commonly used to describe people with disabilities. Many of these are used in the medical world, on evaluations, and by “experts.” They include:

  • Below average
  • Severe
  • Low-functioning
  • Sub-normal (I really hate that one because to me, it’s too close to “sub-human.” As in, “under normal, under human.”)
  • Deficient

Ouch. Ouch, ouch, ouch!

Now, I know the argument here. Within the medical world and the world of other “disability experts,” these are just words. They are accepted terms used to describe assessments, not people. After all, if we didn’t say “severe,” what would we say? If we didn’t say “below average,” how would we determine average or above average? If we didn’t say “disability,” what would we say?

Believe me, I get it. Nothing is perfect, including language. And if you ask me, we’ve already censored our language so much it’s ridiculous. Nobody ever accused me of being politically correct and I don’t intend to make them start now. But here’s reality, guys: ableism exists. It exists, and it hurts, and because experts accept it, so does the rest of society.

Let’s go back to the argument that the words I listed above are used to describe assessments, not people. Sorry, experts, no sale. That argument simply indicates you’re focused on assessments, and not the whole person. Let me speak from experience: an assessment will never, ever tell you who a person is, what he or she can do, and where his or her value rests. And even if you don’t use those words in a hurtful way toward a specific person, they still hurt.

Again, I don’t want to be politically correct. It irritates me to no end when I hear yet another person whining about how someone offended them with one word or the other–when the word itself was not an actual slur or insult. But I know what it’s like to see an assessment of myself and feel “less than” and cheated. For example, I have seen assessments that describe me as having a “severe” perceptual impairment. I have seen assessments that place my motor skills at the level of an eight-year-old. My math skills have been called “below average.”

Those things are true–but hearing them still made me feel like “less.” And let me tell you something, people–if those and other words are the words we use to describe a whole group of people, they will always see themselves as less. People rise to the bar you set, and when it comes to PWDs, our bar is far too low.

Doctors and other experts, I’m going to close this post by speaking to you. Most of you, if you are in the medical profession in any capacity, took an oath promising to “first, do no harm.” Hopefully, you’ve kept that oath in terms of physical bodies–but what are you doing to hearts and minds? Are your words breaking spirits?

If you are not in the medical profession but work with PWDs in other areas: you’ve been called an expert for a reason. The people you claim to work for and help, trust you. But why should they trust people who hurt them? PWDs are already in a terrible position when it comes to things like this. Their “no” means nothing, and they are expected to do everything demanded of them. They are expected to act the way they’re told to act. If you expect sub-normal, below average, and deficient, guess what? That is what you’ll get!

Sticks and stones hurt on the playground, and they hurt everywhere else, too. Let’s stop throwing them and start using healing words instead.

Little Help Here, Please? Who’s Really “Helping the Handicapped?”

Happy October, readers, from my very wet and chilly corner of the world. I’m wearing my emerald green cardigan (favorite color) and armed with a brand new topic, so here we go.

Part of what inspired me to write this blog was a book called Make Them Go Away by a woman named Mary Johnson. Johnson’s book is all about the insidious lack of disability rights–the “case against” even having them–and how ignorance persists even though many people don’t see it. Much of this ignorance comes from the medical model that says disability is akin to a disease, a horrible thing that must be cured or fixed. However, ignorance comes from another source Johnson mentioned, which I believe we need to talk more about.

Johnson explains that disability rights are not often considered a civil rights issue because “we have a time-honored tradition…help the handicapped.” In other words, if ramps and traditional modifications are in place, no matter how inadequate or inappropriate, we shouldn’t be concerned about civil rights. If IEPs are written, ditto, even if they are never enacted. If sheltered workshops exist, what other employment does a person with a severe disability need? If there are merciful, charitable people willing to help, what is the problem?

What a bunch of hooey.

Hear me on this. I am not against traditional methods of help if they are done correctly. When your child with a disability enters school, absolutely he or she should have an IEP if that’s what is going to facilitate the best possible education. If you need a wheelchair ramp, fine, as long as it’s in an appropriate place and actually works. Yet, when it comes to truly helping people with disabilities, I say we’re falling down on the job.

The inspiration for this particular post came from Change.org. I sign some of the petitions that come through this organization. The other day, a petition came through my inbox. It was titled, “Include Liam in First Grade and Treat Him with Dignity.”

Liam is a seven-year-old first-grader who also has Down Syndrome. Liam attends the Mill Valley School District, but he is not educated there. The school system believes it is beneficial for Liam to have a “different curriculum for students ‘like him.'” Liam’s one-on-one aide has testified that Liam has been left standing out in the rain during school because he isn’t welcome in a regular classroom. His school’s administration eventually moved him to a trailer behind the school, where he is “educated” by himself, isolated from peers, using what I suspect is a substandard curriculum. He has already missed a full “normal” year of school.

As my own mother said: if I were Liam’s mother I’d be kicking some tail (and she didn’t say “tail,” which tells you how we both feel about it).

Here’s the thing: who is helping Liam?

I’m sure the system thinks it’s helping when it comes up with solutions like that trailer. I’m sure other people are doing the best they can to help, by circulating petitions and making people aware of the issue. But how much help really exists?

A PWD’s situation doesn’t even have to be abusive for me to ask that question. Think about it. Vocational Rehab services, for instance, were created because a need existed–PWDs needed help finding jobs and acceptance in the workforce. But how many of those programs are understaffed, underfunded, and not appropriate for every client? How many PWDs are being sent to jobs they don’t want, then let go from them six months later, to begin the cycle all over again? What kind of help is that?

What kind of help is it when a gifted student who happens to have muscular dystrophy or spina bifida is allowed to join the Knowledge Bowl team and travel with them–but only given the bare minimum of modifications on trips? What kind of help is it, when the only way that student is allowed to fully participate, is having an aide stuck to him or her like caramel to a filling?

Oh, this one I love. Let’s get down to where I live and where quite a few of you live. What happens when a child with autism is welcomed into a Sunday school class–but the class is not at his or her cognitive level because autism precludes real learning? What about the Sunday school class member with cerebral palsy who is cognitively on par with kids his age, but still struggles with toilet training? Is it “helping” for the teacher to suggest his parents send him to the nursery? (Because really, the FREAKING nursery???) What kind of help is it, when the Christian church reaches out to impoverished people groups in other nations on a regular basis–but they ignore or do the bare minimum for people under their own steeples who need so much more?

Of course, I realize PWDs live in those impoverished nations. In fact, they are probably the most vulnerable citizens of those nations because in their parts of the world, disability laws, IEPs, what have you, do not exist. We need to make the effort to help them. But, as I have always believed, missions of any kind starts down the street. I’m not picking on the church; it’s just a good example. Whether you are part of the Christian church or not, the same principle applies.

“Help” starts with what’s right in front of you. What you see in front of you is a person. They may need a little help or they may need a lot. No matter what though, it’s time for all of us to start rethinking what help means. Modifications, petitions…those are good things. What would happen though, if we went beyond that? If we took a step back from the physical changes we could make and said, “What parts of our attitudes and perceptions need to change?” I think if we started there and worked from the outside in, we would no longer “help the handicapped.” Instead, we would welcome and embrace people we have yet to meet and get to know.