Blog Bonus: I’m (Not Quite) Speechless

Hi readers,

Wednesday night I had the pleasure of watching the premiere of ABC’s new comedy Speechless. You’ve probably seen the previews, but if you haven’t, the show is about a family who moves to a new school district. A big reason for the move is that middle son J.J. has cerebral palsy, and the new school will give him new opportunities. For instance, he’ll have an aide with him to act as his “voice,” so he won’t have to be in self-contained special ed.

I was eager to see this show from the beginning, though not so much because of J.J. as his mom Maya, played by Minnie Driver. Maya reminds me a lot of my own mom. Mom wasn’t as extreme as Maya; for example, she never told off strangers in a parking lot (to my knowledge). But she did do everything she could to make sure I was treated as a person. “We’ve never done this” was not an excuse and “Here’s what I think should happen” was replaced with, “No, you don’t understand me. Here’s what’s going to happen.”

So, was Speechless as refreshing as I expected it to be, and is it worth watching? Does it portray disabilities positively? Well in many ways, I’m glad to say yes.

Speechless is, first and foremost, real. Maya and her family live with cerebral palsy every day through J.J. Sometimes this means J.J. gets a lot of extra attention or that his needs are placed above his siblings’. In one scene, oldest son Ray gets angry with Maya because she’s ready to move the family–again. Ray wants to stay at his new school because it has a planetarium and astronomy club, and a girl who just might like him. When Mom tries to shoot down the idea, Ray understandably says, “Right. It’s something I want, so who cares?” This is something real siblings of people with disabilities go through. But refreshingly, Ray doesn’t blame J.J. for all his troubles or say, “I wish he weren’t here.” Refreshingly, Mom apologizes and agrees to give the new district another chance–while simultaneously explaining that J.J.’s needs will sometimes mean he comes first. It’s not a mark of parental favoritism; that’s just the way things are for this family. Finally, a representation of disability that is honest about what everyone needs or wants.

Even more encouraging, J.J. is a real person, and he’s hilarious. When a couple of strangers stare at him in a parking lot, what does he do? He gives them the finger. (Not condoning the finger; just saying it’s a real response). When he meets an aide who speaks in a “fairy godmother” type voice, J.J. immediately says, “I hate this lady’s voice.” He jokes around with his siblings. He finds a person he would prefer to be his aide, school gardener Kenneth. He is clearly bright, witty, and a pleasure to watch. Actually though, J.J. wasn’t the element of Speechless that had me laughing hardest. That honor went to the tongue-in-cheek humor.

J.J.’s new school is marketed as highly inclusive, accepting, and loving. So much so, in fact, that when J.J. enters the classroom, the teacher has everybody stand up and clap. Why? Because he entered the classroom! He’s such an inspiration! “We’ve never had a student that was taller sitting down than any of us will ever be standing up,” the teacher gushes. Without even knowing him, J.J.’s new classmates nominate him for student council president. J.J. calls them on it, and he’s not impressed at all the inspirational glut. I laughed so hard at that. “Well, it’s about time,” I thought. “About time somebody said ‘take that’ to people who traffic in inspiration porn*!” I only wish J.J. had used his speech board to tell his teacher something like, “Keep clapping, I might do a trick!”

However, the new school is not as prepared to accept students with disabilities as they think they are. According to Dr. Miller, the esteemed principal, the only “disabled egress” is a wheelchair ramp beside the trash cans at the back of the school. Everybody uses it, wheelchair or not. It is routinely blocked. And did I mention, it’s next to the trash? “Are you trash or a person?” Maya challenges Dr. Miller. She proceeds to give a hilarious lesson on “trash vs. person,” and says, “You’re going to build a ramp in front…you’re going to make this school accessible.” Go, Mom!

Now, is this show perfect? No. For instance, I wondered briefly why J.J. was using a word board and an aide as his voice, when assistive technology is available. I can forgive that though, since in real life many people with disabilities use word boards instead of speech technology.

As noted, Maya sometimes comes across as abrasive in advocating for her son. I love how bold she is, but I have to wonder if she’s mistrusting able-bodied people a bit too much. Again, I love a parent who is a bold, unapologetic advocate–I had two of them. But is tearing down people and making them feel “less than,” the best way to advocate? Probably not. I’ll be interested to see where this goes in future episodes, whether Maya learns to balance advocacy and diplomacy, and how well J.J. and others learn to advocate for themselves.

Finally, I was a little taken aback when at the end of the pilot, J.J. accepts that nomination for student council president. It’s played for humor, and it comes after J.J. seems to have accepted his new environment and made at least one friend in Kenneth. However, I question whether that just gave the inspiration porn traffickers what they wanted. Does it still send the message that PWDs are placed in positions of power because they are inspiring and nothing else? I don’t know; there’s only been one episode. I’ll keep an eye on it and keep you posted.

My final verdict? Speechless is worth the watch, and I think it will challenge the way disabilities are viewed, if the powers that be in TV Land allow it to. Tune in when you can.🙂

*Inspiration porn = A term, used humorously or derogatorily, to describe media that holds PWDs up as brave, special, saintly, or inspirational for doing everyday things.

Let’s Get Real About “Attitude”

“Attitudes are the real disability.”

“The only disability is a bad attitude.”

“You just need to cultivate an attitude of gratitude.”

“A bad attitude can block love and blessings from you.”

“A positive attitude gives you power over circumstances.”

“Success is the result of a great attitude.”

Y’all, if I hear one more inspirational quote about attitude, I think I may scream.

It’s not that I disagree with sentiments like this. I completely get what people are saying. Your attitude does influence how you look at life, and no one wants to be around a person who is negative all the time. However, I think “attitude,” and sentiments about it, have been and are being used in an ableist way. We need to expose it and talk about it.

What do I mean? Well, let’s take a look at the first two quotes on my list since they’re the ones that pertain directly to disability. When most people say, “Attitudes are the real disability,” they’re talking about those who discriminate against PWDs. They’re talking about a worldview that says, “The world is wired for the temporarily able-bodied. If you don’t fit that category–and everybody worth anything does–then you need to stay out.” In that situation, the quote is true.

However, a lot of people use this quote on PWDs, too. In those cases they mean, “Your attitude stinks and is stopping you from what you want to do. If you just had a better attitude, you would be able to do ____” (whatever the goal du jour is). Or, “If you had a better attitude, you’d have friends/a job/a life.”

Or how about, “The only disability is a bad attitude?” Okay, again, I get that. Bigoted speech and behavior is a lot more disabling than CP, Down Syndrome, deafness, whatever. But again, this quote is also used to shame people with disabilities. For example, a person with a disability may say, “I can’t do this.” The TAB person with them says, “Yes you can; the only disability is a bad attitude.” This causes the PWD to feel shame, or to attempt to do whatever was being discussed with varying levels of success, which just causes a vicious cycle. Or, the PWD may take the attitude quote to heart and say, “You’re right, I can do this.”

What does the TAB person do in response? Well, best-case scenario he or she gives sincere encouragement. But sometimes he or she says,

“Okay, then that just proves your disability is not a big deal/you’re lazy/you have a bad attitude.”

Really, people? Really? Once again, PWDs can’t win. Once again, you’ve put them in an emotional and mental position that only benefits the temporarily able-bodied. Your intentions may have been good; everybody should cultivate a positive attitude. Yet the way you chose to convey those intentions fell flatter than a pancake.

While we’re on the subject, let’s talk about some other sentiments regarding attitude, such as that a bad attitude blocks blessings or success. This is yet another twisted truth often used against the community of persons with disabilities. Many people use it as a theological weapon, as in, “God cannot bless/does not love those with bad attitudes.” And let me just say, that attitude makes me want to slap people to kingdom come. Read your Bibles. If your sentiment were true, God would not have blessed Hannah because she was “discontent” without children. He would’ve sent Gideon home from battle in disgrace because he was afraid. God also would’ve decided that Paul, who had the definition of a rotten attitude toward Christians, should simply fall off a cliff or get hit by a bus (or the Biblical equivalent of a bus) and go straight to hell. Stop using attitude as a weapon, and stop using it as your personal excuse not to bless people. That person with a disability who you think has a bad attitude? Yeah–maybe that’s because he or she knows that you, who could’ve been a friend and part of a support system, sees him or her as garbage.

Finally, I’d like to challenge the perception, both in and out of the disability community, that it’s all about attitude. Whether they mean to or not, doctors, therapists, clergy, and loved ones often send the message that if you are joyful and grateful, your disability will not matter. Some of them even send the message that joy, thankfulness, and faith will cure disability on an emotional if not physical level. Both suppositions are wrong, and they are harmful.

Yes, living with a disability is a lot easier if you inject humor into your life, express gratitude, treat others with kindness, and find joy in your life. You can choose joy, even when you can’t choose happiness (and yes, there is a difference). I’m not disputing any of that.

What I am disputing is the idea that constant optimism will “make it all better.” I don’t know where we got that idea, although I partially blame Pollyanna (who, by the way, lost her eternal optimism after falling out of a tree and sustaining a disability, which was later conveniently cured). Whatever gave us this idea, I think we got the message garbled. Yes, a good attitude helps you deal with disability. But a good attitude must also be balanced with honesty and sometimes, vulnerability.

People with disabilities need to be told, every day, that it’s okay to express themselves any way they want so long as no one is being hurt. They need to hear that it’s okay to say:

“I can’t do this.”

“I don’t want to do this right now.”

“I need help in this area.”

“I want more than what is being offered to me in school, leisure time, my work, etc.”

“I need support and encouragement. I need empathy.”

Instead, what they’re too often being told is:

“Pull yourself up by your bootstraps.”

“You need an attitude adjustment.”

“You should be content where you are/bloom where you are planted.”

“Don’t whine but shine/you are your biggest obstacle/no one will want to be around you if you don’t shape up.”

 

On this blog, I talk a lot about the discrepancies between how PWDs are treated vs. how people without disabilities are treated. The expectations placed on persons with disabilities are paradoxically much higher and much lower than the expectations TAB people give themselves or have placed on them. This attitude issue is no different. Instead of blaming everything on attitude, let’s try to listen to the PWDs in our lives. Let’s adjust our own attitudes. After all, if you were having a “bad attitude day,” or had to live with a permanent condition like a disability, what would you most want to hear? Would you want to hear the above statements?

I think not. How about:

“Take a break. Take care of yourself.”

“Thank you for trying/doing this task. I know it’s hard.”

“You are so tenacious and smart; I admire you.”

“You are kind, fun, and a pleasure to be around.”

“I am here when you need me, for whatever reason.”

If we say these things I think everyone’s attitudes will improve.

Regina in Everybrooke: A What-If Story

Hello readers,

Last time I was here, I directed you to one of disability advocacy expert Kathie Snow’s articles. The article is called “Annie in Disabilityland,” and is about a fictional girl named Annie who is found to have multiple disabilities including ADD/ADHD and PDD (Pervasive Developmental Delays). If you read the article, you know what happened to Annie after that. If you didn’t, I encourage you to go back and read it.

Annie’s fictional story shows how harmful it can be when parents and loved ones don’t trust themselves to listen to and support a person with a disability. It shows how harmful it is when everything in life revolves around disability. It’s a sad story, even though it has a happy ending. But Annie’s story gave me an idea. What if the world were the opposite? Can it be, someday?

Let’s play make-believe, so to speak. I’m going to do a similar story to Kathie’s. My protagonist is named Regina, after one of my favorite Once Upon a Time characters and because it’s a strong name for a strong girl.

Regina in Everybrooke

Once upon a time a girl named Regina was born into a loving family who thought she was perfect–and she was. She had her mama’s eyes and her daddy’s nose. She had ten fingers, ten toes, and a healthy cry. Her parents had wonderful dreams for her and planned to ensure she grew up smart, strong, and good.

Then the doctors told Regina’s parents she had a disability. At first her parents were frightened and saddened. Did this mean their dreams for their daughter wouldn’t come true? Would she be able to learn, and run and play with other children? How would she grow up? Would she be okay?

The doctors understood, but they were kind and encouraging. You see, this family and these doctors lived in Everybrooke. Not every community was like it, but many were, and many more were becoming so. “Raising Regina may be hard sometimes,” they told her parents. “Your dreams may change. But your daughter is going to be just fine. We’ll help you. We’re here when you need us, but never forget, Regina needs you most. You are the ones who will teach her who she is and will be.”

So Regina’s parents took her home and got her started in life like any parent with any baby. Regina grew up with her parents and eventually, siblings. Some things she could do well, and others she struggled with or didn’t like to do. For example, she never quite learned to tie shoes, but Mama and Daddy said that was okay. Everybrooke had a huge shoe store, and lots of people wore shoes without laces. Sometimes someone called a “therapist” helped Regina learn certain things. But mostly she learned by playing with Mama, Daddy, and her brothers and sisters, like every kid.

When Regina went to kindergarten, she was amazed at what she found. Her classroom was bright and cheerful, and filled with all kinds of kids. Some had black or tan or white skin. Some kids were from different countries and spoke with accents. Some wore different clothing or prayed at different times of day as part of their religion. Regina knew the word “disability,” because some of her classmates had those, too. But nobody at Everybrooke Elementary seemed to notice much. All the desks were different heights, and some were made for wheelchairs. The playground had different kinds of equipment so everyone could play. There were no high curbs; they all sloped down to make stepping off easier. Regina’s teacher let all the kids work together on assignments so that if someone had trouble with one subject but was strong in another, he or she could be the helped and the helper. Sometimes kids teased Regina, and sometimes she saw other kids get teased, or did it herself. But every time someone did that, he or she got into trouble, and saw how silly it was to make fun of someone for being different.

So Regina continued to grow up in Everybrooke, moving from classroom to classroom with all kinds of friends and teachers. She was invited to birthday parties and eventually, asked on dates. If she couldn’t do something or go somewhere, the people around her were able to help her think of alternatives. Along with the other kids in her class, Regina split time between academics and extracurricular activities. At home, Mom and her sisters helped her learn about cooking, laundry, and handling money. When stirring a pot made Regina’s arms hurt, they suggested she sit down to do it or use an electric mixer. When she couldn’t fold laundry exactly like her sister could, Mom suggested garment bags. Mom and Dad talked often about what Regina would do after high school. They asked what she wanted to do and listened to what she said.

One day Regina told her parents she wanted to see what life was like outside Everybrooke. Some of her school friends were going on a senior trip to a different city several hours away. Though Mom and Dad were nervous, they agreed to let Regina go because friends and teachers they trusted would be on a trip. Mom and Dad knew the teachers were used to meeting everyone’s needs and encouraging students to work as a team when possible. So Regina got on a bus equipped with handrails, seatbelts, and other things everyone might need, and went on the senior trip.

Regina knew she was no longer in Everybrooke when she got off the bus. She started to step off a curb, expecting a flat surface. But it was raised instead, and many students fell, those with and without disabilities. No big deal, she thought. Mom and Dad had taught her that you got up when you fell, physically or otherwise, and her friends were here for her. They all laughed about it.

But soon things stopped being funny. Regina and the other students noticed something odd about this big new city. Of course it was flashy and fun, with opportunities around every corner. But Regina and some of her classmates garnered stares. Some people hissed hateful words at the students with disabilities. The students with different-colored skin or different accents, or the ones who followed different religions, seemed to get along fine. But the whole group felt the change, like hot, oppressive air. When a classmate asked for a Braille menu at a restaurant, the waitress looked confused and put out. When the students went to a movie or concert, classmates in wheelchairs had to sit apart, or wait at the hotel because the seating wasn’t “accessible.” Once, an impatient man shoved in front of one of Regina’s classmates, a boy who flapped his hands or clicked pens to stay calm. “Why didn’t his parents teach him to act normal?” the man exclaimed.

As part of their trip, the students toured a famous university. As with everywhere Regina had ever been, everybody seemed different. Yet, she didn’t encounter wheelchairs, pen clicking, almond-shaped eyes, or any of the other features she knew were part of some classmates. So she pulled aside an administrator.

“Excuse me,” she asked. “Where are the students with…disabilities?” She’d said it before in Everybrooke, but the word felt strange here, as if she were confessing to a crime.

“We don’t have many. We have a special program for a few students whose disabilities don’t keep them from attending.”

“So where are they?”

“They might be participating in voluntary work hours right now, or auditing classes.” The administrator spoke to Regina as if to a little kid. “That’s when you take a class, but not for credit.”

Regina boarded the bus home thoroughly confused. What was wrong with that university, and that community? Why were all the people with disabilities missing, or treated badly? Why did they seem to confuse people? Was disability something horrible, like a disease, and her parents just never told her? By the time she reached home, she was in tears.

“I’m not sure I want to leave Everybrooke,” she told Mom and Dad. “Not if that’s what’s waiting for me.”

Dad nodded, a somber look on his face. “You were blessed, Regina. You were born in a time when people were beginning to understand disability as a difference. We were blessed to have kind people around us, and live in a place where everyone is included no matter what. Most places try their best to do and be that. But some–well, some haven’t caught up yet.”

“But what if I get a job in one of those places? What if the people in charge say I can’t learn, or be with my friends, or…anything?”

“Then you stick up for yourself,” Mom said. “You be the strong, smart girl we know you are. Not every place is Everybrooke. But everywhere you go, there are understanding people who will help you and love you. We can help you find those people and places so you have your best life.”

Regina nodded and bit her lip. “So, I don’t have a disease? I’m not some weird alien.”

“No, precious girl. You are different, like your friend Sarah is different because she has black skin, or like Ross is different because he’s Jewish. Those differences are part of who they are, not a definition of it. It’s the same for you. Maybe you left Everybrooke so you could begin to learn that lesson.”

 

 

Of course, you and I don’t live in Everybrooke. I guess Everybrooke is kind of like Perfect in those old Walgreen’s ads. But imagine: if every curb had a cut, if every door was automatic, if every classroom was inclusive…just because it was accepted? Imagine if disability were celebrated and treasured, like skin color, religion, national origin, or any other difference. Imagine if, in the almond-shaped eyes of Down Syndrome, in the deft hands of sign language for the Deaf, and in the many manifestations of autism, we just saw uniqueness. Imagine if every child grew up to be an adult who was listened to, befriended, and supported–loved by family, friends, and yes, significant others.

I like that ending, don’t you?

*Please note that “disability” could be swapped out for any difference. Skin color, religion, sexual orientation, you name it, is still scorned, and that is wrong. The goal is to show what it would look like if we stopped treating disability in particular as a sickness, tragedy, or aberration, because this seems to happen to PWDs more than other groups. But the main point is, all differences are good.

Blog Bonus: Never Too Late

Hello readers,

Benjamin Franklin once said nothing is certain in this world except death and taxes. While I agree with him–and really, who doesn’t–I think he may have left out something. Time is certain, too. Because of the way the world works, because of its fallen nature, we have limited amounts of time to do things. There are only 24 hours in one day, 7 days in one week, 365 days in one year. If we’re smart we learn how to use those hours and days judiciously. Even those of us who are good at time management often feel like we’ve run out.

I wonder if people with disabilities are vulnerable to feeling like time is running out more than most? Actually, I don’t have to wonder. I’ve felt that way often. For instance, by the time my mom was 30 she had already known my dad for years. They’d been married since 1982, and she was 30 by the time I was born. Meanwhile, I’m still single. Although I believe God is allowing my time of singleness, and even though I intend to use it well for His purposes, I am feeling some pressure. After all, I don’t want to be 70 when my kid graduates high school, you know? And that insidious little voice inside whispers that cerebral palsy is the main reason I’m still waiting.

By the time most people are my age, they’ve lived outside their parents’ homes for at least a decade and usually longer. Millennials have changed this somewhat, as has our sluggish economy. Yet the pressure, the inner ticking clock if you will, still exists. “Get moving before you become a disability statistic! Do something–your parents won’t be around forever!”

In fact, ever since my maternal grandmother died I’ve been increasingly faced with two facts. One, I have one grandparent left. Two, once she goes on to eternity, there is no one “in front of” my parents anymore. Grown woman or not, that’s just plain scary especially in my situation. And so I don’t think it’s far-fetched of me to say that other PWDs might be feeling their clocks tick, too.

Maybe you’re the loved one of a person with a disability and have felt or said similar things. For instance, maybe your child was born with severe physical disabilities or a severe intellectual one. Maybe he’s six or seven right now and you’re saying, “Is it too late to take him out of a special ed school and mainstream him? Maybe it’s too late for him to learn to read and do math like his peers can. It’s way too late for early intervention services, isn’t it?”

Maybe you’ve got a teen with autism at home, as do a couple of the ladies I met at my recent conference. Maybe you’re saying, “She’s ten; it’s too late to teach her independent living skills. She’s 15 and we just got the autism diagnosis because our physician believed girls don’t get ‘real’ autism. It’s too late to find the people who will best help her.” (Actually, let me answer that really quickly–*you* are the best person to provide what your teen needs).

Maybe you’re like me. You have a disability and have fought all your life for a shred of what the TAB world calls normalcy. Aside from the fact that “normal” is a dryer setting and not much else, it feels lonely and awful. Like me, you might say things like:

“I’ve tried Vocational Rehab and job services. They won’t help me the way I need. I’ve been bullied at work or turned down for many jobs. It’s too late for me to have a meaningful career.”

“I wanted to be left alone to play as a little kid.” (By the way, this is a natural desire). “I didn’t cooperate as much as I should’ve at therapy and now it’s too late to learn to cook, do laundry, whatever.” (Baloney. Remember, very few human beings ever do a perfect load of laundry or cook pheasant under glass. And you don’t need a therapeutic setting to learn that stuff).

“My parents sent me to this group home when I turned 18. It’s a nice place and all, but I want something else. The problem is I’m 25 or 30 and it’s just too late.”

That ticking clock gets to us all, yours truly included. I’m still learning, in fact, that time is more relative than I always thought, was always taught, it was. The truth is, our time is finite. We will all run out someday. But if you’re sitting here reading this blog, then your day is not today. You have time!

I think that without meaning to–and sometimes being fully aware of what they’re doing–temporarily able bodied people push their own timeline onto PWDs. It’s what happens when teachers or therapists say things like, “Our goal is for Colleen to complete X goal by spring semester.” And then when Colleen doesn’t do so, they write the goal off–effectively writing off Colleen as a failure, too. It’s what happens when aging parents shake their heads and say, “But John’s already 40,” meaning that, perhaps, if he hasn’t achieved independence now he never will. (And by the way–preaching to the choir here–there is nothing wrong with living with family members if that is what the situation calls for. But do not assume it is a permanent state).

By continuing to focus so much on our own clocks, we cheat ourselves. When temporarily able-bodied people insist that persons with disabilities live by their clocks, they deny them the chance of a life lived at their own pace (which is what people without disabilities get just by virtue of existence). They also place people with disabilities in a box, reinforcing feelings of shame, hopelessness, and failure.

Not every TAB person means to do this; in fact, I’d say most don’t. They love the person with a disability in their lives. They are simply responding to the pressure they feel, and their own fears. You know, fears that say things like, “I won’t be here forever. What will Brock do without me?” “Yeah, Julie’s doing great at school now, but how much will her dyslexia/dyscalculia/Down Syndrome/CP affect her in college? Should I even let her attend college?”

I’m going to challenge you and myself today, readers. The challenge is, stop listening to the clock. Start telling yourself and the person with a disability in your life, “It is never too late. You can do whatever is needed or wanted to change your life and I am here for you.”

I’m going to leave you with the links for two separate articles from disability advocate Kathie Snow. One is called “A Tale of Two Students,” and tells the story of two high school boys, Dylan and Brad. Both have Down Syndrome, but Dylan’s parents treated it as natural. Brad’s parents did not. For Dylan, the future looks fulfilling. For Brad, it does not–but what would happen if his parents turned it around? If they said, and taught Brad to say, “It’s not too late?”

The other is called “Annie in Disabilityland.” In this story, Annie’s parents found out she had a disability. They listened to what all the “experts” said to do because they didn’t think they were the best people to help Annie. By the time Annie is ready to graduate high school, she is headed to a group home she doesn’t want to be in, is not independent, and is working a job she never asked for. But then she speaks up, and her parents listen. They fear it’s too late to turn things around–but it isn’t! Their decision now means they have all the time in the world.

Both stories are fiction, but the lesson is real. Turn off your clock, and turn off theirs. Let’s make the most of the time we have.

https://www.disabilityisnatural.com/annie-disabilityland.html

https://www.disabilityisnatural.com/tale-two-students.html

 

 

 

Disability 101 Part 4: Autism

Hello, readers!

I just returned yesterday from a five-day speakers’ conference and am blown away at the uplifting environment and the friends I met. I was actually a little reluctant–okay, a lot reluctant–to get back to “the real world.” But I promised you a month’s worth (perhaps more) of these posts, so back I am. Today’s topic is autism.

I saved autism until now for a couple of reasons. First, because it’s a highly complex disability–which most are, actually, but this one is more so in my humble opinion. Second, because it is so prevalent right now. Awareness, research, and increased incidence of autism have made it easier for people to educate themselves if they choose. But when educating ourselves about autism or any other disability, we have to be careful with our sources. And with autism in particular, there’s a lot of conflicting information out there. I am going to do the best I can to give you basic, trustworthy information. So here we go.

What is autism?

The very definition of autism is complex. A lot of people don’t even use the word “autism”; they instead use “autism spectrum disorders” or ASD. This is because autism can encompass so many different types of abilities and disabilities. According to autismsciencefoundation.org, autism is “a brain-based disorder characterized by communication challenges and restricted, repetitive behaviors, activities, and interests.” The Center for Disease Control considers autism a “developmental disability” that can cause “significant challenges” in communication, socialization, and other areas. It is important to note that, while some cases of autism cause cognitive or mental disabilities, autism itself is *not* a mental disability. Many people with autism have average, above average, or gifted IQs and can function quite well cognitively.

Autism is not considered a classical physical disability either, although some people who have autism do experience physical manifestations. For example, some people with Asperger’s Syndrome, which is considered an ASD, may have coordination problems. “Stimming,” or the repetitive motions and behaviors some people use, could be considered a physical symptom also. Stimming can be anything from swaying or rocking, to clicking a pen, twisting your hands, or repeating words (echolalia). Stimming should be considered a natural part of autism, not a “behavior” that needs to be punished out of a person. (Please note that stimming can be curbed; if it is violent, it should be. But that process should be gentle and take into account the whole person).

How long has autism been around?

Like many if not all disabilities, it’s probably been around forever, but it was first identified and studied circa 1943, thanks to Dr. Leo Kanner. Kanner’s research involved 11 children who, though they didn’t seem to be interested in other people, were highly interested in the environment around them.

Autism gained more publicity in the ’60s and ’70s, partially thanks to so-called experts who blamed parents, especially mothers, for the incidence of it. Mothers of kids with autism were disparagingly called “refrigerator mothers,” and children with autism were regularly institutionalized, shut away from society and life. Thanks to pioneers like Temple Grandin and her mother, as well as increased understanding, autism is now being seen in a more positive light, but it is quite a slow process. That’s why advocates, teachers, attorneys, and others are here.

How common is autism?

The last statistic I encountered was about 1 in 88 births, according to the CDC. According to the Autism Science Foundation, autism is also 4.5 times more likely to affect boys than girls. However, research indicates autism’s prevalence may increase in coming years. In fact, some people with autism believe that it isn’t a disorder at all; people with it simply have a different brain makeup. As in, people without autism have PCs; those with it have Macs. Thus, the people who subscribe to this view think autism will someday be a “new normal.” I’m somewhat inclined to agree; in fact, I think that might be a very good thing.

Are there classical features?

No. In fact, one of the worst things you can say to or about a person with autism is, “You don’t look autistic” or “But you’re so normal!” I’d like to reiterate that trying to define disability by looks alone is extremely harmful, even if classical features exist.

How do people with autism feel about people-first language?

I wanted to include this part because I’ve seen many responses. Many people actually refer to themselves as autistic or “autistics” or “autists.” They believe autism is an organic part of their identity, so to them, saying “person with autism” is to deny who they are. I respect that completely. Since this is a person-first language blog I will continue to say “people with autism,” but may use “autistic” at various points.

Can people with autism be independent?

As with all disabilities, it completely depends on the person. Ironically enough, persons with high-functioning autism (HFA) may have the hardest times becoming independent because, while they are highly intelligent, basic things about the environment trip them up. For example, an autistic person may have an encyclopedic knowledge of forensics and be able to work as a police detective in theory–but organization, overstimulation in the workplace, and other factors make that difficult.

This does not mean autistic people can or should only be consigned to menial jobs and supervised living. As with other disabilities, people with autism should be seen and defined by their names, their strengths, and what they can give to the world. Individualized attention and services that work with the whole person are desperately needed.

Should we use “functioning labels” when talking about autism?

This is a tricky one, because talking in terms of function helps us to understand different types of autism. However, I personally wish we could stop using “functioning labels” like high- or low-functioning for everybody, even if these terms are technically correct. Why? Because we don’t use them for TAB people (we don’t say, “She’s a low-functioning driver because she can’t parallel park.” Also, because how you “function” changes from day to day and situation to situation. The Simon with autism who gets excellent math grades and loves anything to do with animals, is the same Simon who may stim or scream when overstimulated.

Myths and Facts:

Myth: People with autism cannot show empathy/are selfish/turn out to be serial killers.

Truth: Oh, do I EVER hate this myth! It exists for many reasons; for example, some people believe Adam Lanza, the shooter of Newtown, CT, had some form of autism. Also, the word “autism” contains the stem “aut,” meaning “self” (as in, automobile, autobiography). For that reason and others, many people assume autistic people cannot and will not empathize with others.

The truth is, people with autism can and do show incredible empathy; in fact, many autistic people may empathize too much. In empathizing too much, they may convey an attitude of, “It’s all about me,” but this is NOT what is intended.

Myth: People with autism are not social.

Truth: People with autism often find it harder to socialize with peer groups. Sometimes this can be because of specialized interests, and sometimes it’s because they can’t read some social cues. However, autistic people can socialize well if given your time, empathy, and patience. Some autistic people are actually very social, to the point of extraversion, but may find certain cues or phrases like idioms confusing.

Myth: Girls don’t really get autism.

Truth: I frequent a lot of web pages that talk about the struggle of autism as experienced by women and girls. It is true that females are harder to diagnose than males. This can happen for a lot of reasons, but it’s often because women and girls are better “actors” than guys. That is, girls and women will observe peers and learn to imitate their social cues and interactions to fit in. Boys do this too, but may not be as proficient at it. Also, girls with autism tend to have specialized interests like dolls, books, or fashion. These are things a lot of typical girls like, so unless you know the particular person well, those interests tend to “blend in.” The same cannot always be said for boys, who may have interests in dinosaurs, trains, Medieval armor, etc. These interests are less common, and boys may tend to memorize and repeat more information about them than girls. However, girls do get ASDs and should be given the support they need to live with them.

Myth: Autism is a tragedy.

Truth: Unfortunately, there are many, many people who still believe this, courtesy of expert opinions and organizations like Autism Speaks (which does not speak for me, nor do they speak for many other autistics). Parents who have autistic children often picture worst-case scenarios of people who will need 24-hour care, never socialize, and never mentally leave toddlerhood. While this sometimes happens it is not the norm. People with autism can and do lead happy, significant, and fulfilling lives.

Myth: If my child/teen/loved one with autism is low-functioning, there is no hope.

Truth: There is always hope. Your love and tenacity will make a big impact in this person’s life. This person does love you, even if he or she cannot say it. Hold onto that. Seek out services and individuals who will respect you and your loved one, and treat him or her like a person while helping you deal with the ramifications of autism.

Myth: X causes autism.

Truth: I don’t care what you replace that X with. There are a billion different theories regarding what causes autism, from vaccines to milk to breathing wrong. None of these have been conclusively proven and studies regarding them have often been harmful (ex.: vaccine studies, although I am not here to talk about the vaccination debate at the moment). Get off the autism cause bandwagon and just befriend and support those living with it.

Myth: X cures autism.

Truth: There is no current cure; many autistics don’t want one, and we need to respect that. We also need to beware of information on abusive cures, such as bleach enemas. (Yes, some parents have given their children bleach enemas in hopes of curing autism!) You cannot “therapy” autism away. You can’t spank it away. You can’t cure it with a diet or exercise regimen. It’s just there. Embrace autistics as they are, instead of trying to “fix” them. Autism is not the end of the world–but constant cure efforts could severely impact their world. Let’s instead make the world a good place for autistic people to live and thrive.

Disability 101 Part 3: FASD

Hello readers,

Today’s “lesson” focuses on Fetal Alcohol Syndrome Disorder (FASD), sometimes called Fetal Alcohol Effects (FAE). FASD made it onto my list thanks to interest from a couple of readers who requested I cover it. So thanks, readers, and here we go.

What is FASD?

FASD is called an “umbrella term” for a range of effects, including lifelong disabilities, that befall a baby whose mother drank alcohol while pregnant. Unlike Down Syndrome and cerebral palsy, FASD is not considered a clinical diagnosis. Instead, an individual known to have fetal alcohol syndrome would be diagnosed with such terms as Neurobehavioral Disorder/Alcohol Exposed, Fetal Alcohol Syndrome, Partial FAS, or any number of other terms. This is meant to reflect the “spectrum” nature of FASD, as well as the differing amounts of alcohol exposure an individual may have had in the womb.

About 40,000 babies are born with FASD and diagnosed with a disorder on that spectrum in the U.S. each year. The symptoms are myriad and unique; much like CP and some other disabilities, two people may present with some of the same symptoms but not all of them. The symptoms an individual presents with often depends on his or her specific diagnosis. For example, symptoms are different for partial FAS than they are for “full” Fetal Alcohol Syndrome.

Are there classical features?

Yes and no. Some people present with certain features such as minor facial differences like small eyes or a thin upper lip. Sometimes the facial differences are more noticeable, and sometimes no discernible physical features exist. Some people are born with their height and/or weight below the 10th percentile for their age groups, and continue to have growth issues throughout life. It’s important to note that while these features can be major markers of FASD, it sometimes cannot be proven that the person was exposed to alcohol. The origin of the features may be traced back to something else, or the cause may be unknown.

Does FASD impair functioning or learning?

To some degree, in many cases. According to depts.washington.edu, FASD is “the leading known cause of intellectual disabilities,” and there can be neurological and functioning impairments. A person with FASD may also have trouble with what’s called “adaptive behavior.” However, the manifestation of these effects depends on how much alcohol the person was exposed to, how much brain damage was sustained, and other factors. Intellectual and neurological impairments seem to occur across all forms of diagnosis, but as with other disabilities, the degree of impairment determines a lot about how the individual’s disabilities will be handled.

Many people with FASD are considered to have “invisible disabilities,” sometimes because their disabilities get blamed on something else. For example, a person with FASD, especially a child, may not be able to connect consequences to actions. Especially in childhood, this can be misinterpreted as the child being spoiled or defiant. Thus, some aspects of FASD are overlooked. Advocacy and self-advocacy for people with this condition is crucial. While that’s true for all disabilities, I’d venture to say it’s even more vital for those whose disabilities are “invisible.”

What is life like with FASD?

Again, it would be next to impossible for me to paint you a “typical” portrait, which is why I lean heavily on research. According to No FASD Australia (nofasd.org.au), basic symptoms may include:

-Learning disabilities and/or difficulties (again, others may not connect this to FASD right away)

-Hyperactivity and impulsiveness

-Inability to connect actions to consequences

-Sensory difficulties/issues, such as disliking particularly loud sounds

-Memory problems

-Social and developmental delays

Can people with FASD be independent?

As with all disabilities, this depends on the person. Independence may be harder for certain people with FASD because of traits like impulsiveness and other neurobehavioral issues. As with other disabilities, people with FASD are often unfairly stereotyped and labeled. The TAB people around them assume they simply refuse to do or be certain things, when in reality they cannot and will not do or be those things. This often leads people with FASD to experience a constant sense of failure, which may negatively influence their behavior and life trajectory. Some people with FASD live in a state of dependence on family and government; others become impoverished or homeless.

Despite this, the picture need not be so bleak. People with FASD can lead fulfilling lives if those around them are educated regarding what they have and what they need. Remember, many cases of FASD involve “invisible disabilities,” so if you are the loved one of someone with it, you must speak up and teach your loved one to speak up. You have options, such as educations tailored to your loved one and an adult lifestyle that accommodates their needs. For example, many people with FASD use memory prompts and clear schedules to help them get through daily life. Like people with certain other disabilities, people with FASD need and depend on routine. They need a support system made up of people who both recognize their needs and nurture their strengths.

Myths and Facts about FASD:

Myth: If you drank during pregnancy, it is your fault the baby has FASD. If you drink while pregnant your baby will automatically have the disorder.

Truth: It is never advisable to drink while pregnant, simply because we don’t know how much alcohol exposure can trigger FASD. However, if you are the mother of a person with FASD, know it is not your fault. You didn’t know specifically what might happen, and no mother worth her salt ever sets out to purposely harm her baby. Remember too, that the effects of FASD cannot always be traced directly to alcohol. In other words, that one glass of wine you had on New Year’s Eve is probably not the reason your child has an intellectual disability or other issues.

Myth: Adults don’t have FASD/you “outgrow” it.

Truth: This is one myth I wish were nonexistent for all disabilities. You do not outgrow FASD. In my opinion, some people may persist in thinking this because they cannot accept manifestations of FASD in adults that they would write off in children. This is unfair and stifles the individual. Adults have FASD and live with it every day. They also have the chance to be independent, productive, and happy if we let them–so let’s let them.

Myth: People with FASD can’t learn/their ability to learn stops at about fourth grade.

Truth: Learning is tough for a lot of people with FASD, and whether you have a disability or not, fourth grade is notoriously hard. You’re reading the blog of a person who failed fourth grade math. This is because the curriculum and learning styles of most schools change significantly from grade four onward. However, learning doesn’t “plateau” then for kids with FASD or any other kids. Kids with FASD may *appear* to stop progressing, but they just need extra support and perhaps different teaching styles. (This is where advocacy comes in, as does the support of things like IEPs, self-contained classrooms as needed, etc.)

Myth: FASD is an excuse for bad behavior. People with FASD could do better if they tried harder.

Truth: This is another myth that boils my blood, because it reduces the person to some annoying oddity who wants and enjoys his or her disability. Nothing could be further from the truth. It’s not that people with FASD don’t want to behave in a socially appropriate way; sometimes they just cannot do it–the same way a person with CP might never be able to walk or speak clearly. Accurate diagnosis, compassion, and support is needed so much!

Myth: People with FASD cannot maintain relationships because they cannot “behave.”

Truth: No; people with FASD do have family members, friends, and even significant others in their lives who love and understand them. Like all people, those with FASD could always use more relationships. Awareness and acceptance makes that happen.

Myth: People with FASD should not have children because the children will get FASD. Anyway, they can’t raise children.

Truth: There is no genetic link present in FASD, and people with it can raise children with adequate support.

Come back soon, readers; I so enjoy sharing these posts with you.🙂

 

Blog Bonus: We’re Still Relevant, Darn It!

And now a brief message from these sponsors (just kidding, we don’t have any).

Have you ever gotten involved in something, like I did with disability advocacy, and then a few weeks or months or years down the road wondered if you were still relevant? I know I have. Just the other day I was thinking about the disability rights movements of the 1970s-’80s, back before we had IDEA or the ADA or any of that. And I thought, “Well, we have all that now. Most people are not actively trying to treat PWDs as second class, are they? I mean, what if I made all this up because I’m just a bitter person?”

And then I got a timely reminder that you, and I, and all the advocates out there: we’re still relevant, darn it!

This happened while I was killing time and letting the recent post on CP percolate, while watching YouTube. I semi-frequently watch a video series called Messy Mondays. These are created thanks to a college student named Jordan who is a Christian and grew up in the Bible belt. They are funny, insightful, and tongue-in-cheek looks at the Christian subculture.

One such video is titled “The 10 Kids You Meet at Youth Group.” In it, Jordan and his friends go over examples like the pastor’s kid, the kid who’s there to play games, the super-spiritual kid, etc. A lot of people wrote in to comment on types that were left out.

I noticed one person wrote in and said (paraphrase):

“The down syndrome kid. You know that kid who wins games for doing nothing and is always hitting you but doesn’t get called out because they’re special.”

I mean, ugh.

1.  You at least could have capitalized Down Syndrome, grammar murderer.
2. What, did you see Educating Peter one too many times? (Horrible documentary, BTW, largely because it shows Peter acting in stereotypical ways, such as hitting people and screaming. You know like, “Look, this is what all people with Down Syndrome do.”) No, it’s not, and those who do engage in that kind of behavior need to be reprimanded, but understood as well.
3. “Don’t get called out because they’re special?” Well if that’s true, that means the leaders have problems, not the youth group member.
4. Wins for doing nothing–okay, yeah, I’ve seen that one with other disabilities. Some youth leaders, teachers, etc. believe that in order to make PWDs feel included you have to let them win, or get rewarded without effort. In actuality, this is harmful and only perpetuates pity and stereotypes, so quit doing it.

Look, I’m sure examples of this person exist in some youth groups and other circles, but not everywhere. And if it were just that one stupid comment I wouldn’t be posting. But what got me is how several people *agreed*, saying things like, “Yeah, this kid hit me one time with her 2-pound purse and nobody did anything”, “I KNOW, right?” and even, “Down Syndrome kids are a waste of effort if you ask me.” (Which nobody did!)

My point? Wake up and smell the coffee, advocates. You’re still relevant. I’m still relevant. It’s not 1975 or 1982 or even 1990 anymore, but as long as attitudes like this exist on the Internet and in real life, we’ve got work to do. If a person with a disability is still being barred from anywhere–from church, of all places–we’re not done.

We’re still relevant, darn it! So get out there and be relevant.