Tomorrow Is Too Long to Wait for Inclusion

What Is so Wrong with Inspiration Porn?

What is So Wrong with Inspiration Porn?
By Andrew Pulrang

This post was originally published at disabilitythinking.blogspot.com.

I am still working on a sort of master post on Inspiration Porn, but I want to take another detour to talk about a subset of this loosely defined phenomenon. I’ll call it High School Gestures, referring to three practices that have become popular in American high schools and a familiar trope in “feel good” media:

1. High school students electing a disabled student to be Prom King or Queen.

2. Organizing and hosting “special” prom events, specifically for disabled students.

3. Allowing a disabled student to “run a play” with a sports team.

Three Key Factors Make These Practices a Type of Inspiration Porn:

1. They are all intended to be “good deeds” for people assumed to be stigmatized and unable to make satisfying social lives for themselves.

2. Media coverage of these events almost always focuses on the kindness of the organizers, relatively little on the disabled individuals these events are supposed to benefit, and not at all on the stigmas and barriers disabled students face every day in their effort to participate in school social life.

3. The events are often further interpreted as encouraging signs that “the kids today” may not be going to Hell after all … the premise being that on every other day it seems like they are, an unfair and insulting idea in itself.

Labeling these kinds of events Inspiration Porn obviously indicates that I have problems with them, and I do. They are usually well meaning, but contrived and, in a sense, fake. I worry that later in life, some of these disabled youth will look back on these “feel good” events and and cringe at how patronizing they were, and wonder how they allowed themselves to be treated as objects of pity and charity. No matter what the specifics, these events are almost always reported in the same sentimental way, so that even when a specific event is really sincere, it still comes off as weepy Inspiration Porn. The worst thing, in a way, is that these are usually “one off” gestures that benefit one especially loved disabled person, while most disabled kids are unaffected.

Let’s be clear. An unstated premise of these gestures is that “normal” high school social rituals are inherently exclusive and off-limits to most disabled students. That is the problem, and these flashy gestures don’t do much to change the situation. It’s like giving a box of extra-tasty chocolates, just once, to starving person, instead of what they need, which is a reliable diet of nutritious food.

In addition, a lot of disabled people themselves find these kinds of practices truly vile and offensive, in a very personal way. And I think it’s important to emphasize that this feeling is real, not intellectualized or theoretical, or deployed merely for rhetorical purposes. And no, it doesnt matter that the intentions are good. We feel it like a gut punch.

On the other hand, I have started thinking that the acts themselves aren’t always so terrible; it’s the way they are reported that makes us gag. In a couple of cases about prom court elections, it seemed like the students sincerely voted for people they genuinely liked, almost without reference to their disability. It’s just that the media covered it like it was a charitable act. Still, one or two isolated examples just don’t go far enough when the majority of disabled students are entirely left out of extracurricular activities and social life.

Focus on Lasting Change Instead of Inspiration Porn

Instead, I would prefer schools to discourage these types of grand, benevolent gestures. Here are some ideas on how schools can take up the long-term and less immediately gratifying job of removing barriers to a full social life for all disabled students.

1. Schools should support a wider variety of extracurricular activities, besides the prom and the the most popular sports programs. “Schools should support” means school district taxpayers should demand and agree to pay for more diverse, robust social options that appeal to all kinds of students, including those with disabilities.

2. Schools should create clubs and organizations that are associated with the top sports programs, but serve peripheral support functions and can accommodate non-athletic participants. It’s unrealistic to think that chess club, theater companies, and community service groups are ever going to be as popular as football and basketball, so let’s create and recognize some real support roles that disabled students … and other non-athletic students … can play.

3. Make it absolutely clear that all students … including those who don’t have dates and just want to go and have fun … are welcomed to attend all of the proms, formals, and other social events. The long term goal here might be to permanently de-emphasize the “coupling up” aspect. Also, it would help to downplay the most expensive aspects, like tuxes, gowns, and limos. Don’t ban them, but don’t glorify them.

4. Instead of charitably giving awards and honors to disabled people who would probably not qualify under ordinary circumstances, create a wider variety of awards and honors that are honest and real, and which disabled students (and others) can more frequently earn without anyone having to make a “special” effort.

One argument against these suggestions might be that they shortchange students on learning valuable lessons about kindness and generosity. For one thing, that’s like saying that we need people to be in poverty so that everyone else can learn to be generous. I would also counter that there are much more important lessons to learn about respecting and including all kinds of people and normalizing those values, rather than treating ordinary decency as some kind special gift that privileged people occasionally bestow on those deemed “less fortunate.”

In short, a little less “Make-A-Wish” and a lot more commitment to deep integration and equality. That’s what we should be shooting for. It’s harder to accomplish, but the long term benefits are far greater than the fleeting results of one or two big, short-term gestures per year. And although wholesale culture change sounds like a near-impossible task, these specific steps in that direction are eminently achievable.

We have to insist on it, not just for our disabled students, but for all of them.

 Photo Credit: Joshua Zader/Flickr
AndrewPulrangAndrew Pulrang writes for the Disability Thinking Blog as well as hosts a podcast about the depictions of people with disabilities on television called Disability.TV. Follow him on Facebook and Twitter.

 

Man with Spinal Muscular Atrophy recounts his inclusion experience at Plant High School.

Man with Spinal Muscular Atrophy recounts his inclusion experience at Plant High School.

Photo Credit: Leo Reynolds/Flickr

Michael Phillips, a 32-year-old man, who has Spinal Muscular Atrophy experienced inclusion at Plant High School as a student.

It is easier to see how students with significant disabilities can be included in elementary school. The demands are often not as high as in high school and the students are usually more welcoming. Watch and read this incredible story of Michael, now a 32-year-old man, who experienced inclusion at secondary school in Tampa Bay, Florida.

Born with the most severe form of spinal muscular atrophy, Phillips could not walk or sit up while attending the South Tampa school. He used a voice amplification device to take part in class discussions. A special switch allowed him to use his thumb to take photos and lay out pages on a computer.

At Plant he experienced “inclusion,” making friends with able-bodied peers and outshining many of them in class. But that followed nine years when Phillips says he was segregated with children who had a wide array of disabilities.

For more visit: http://www.tampabay.com/news/education/k12/an-argument-for-inclusion/2112201

What do you think of Michael’s story? Is this a good example of authentic inclusion? Tell us about it in the comments section below!

10 Surprising Things Parents of Autistic Grads Must Know

10 Surprising Things

By Kathy Porter

Ready or not, you will soon be the parent of a high school graduate. If your son or daughter is on the autism spectrum, like mine, you might feel a tiny bit scared underneath all the euphoria of this wonderful time. Behind you trail 18 or so years of priceless memories—an uneven mix of happiness, frustration, extreme awfulness, fun adventures and educational milestones.

Ahead of you is a world of transition: the in-between stage that prepares your teenager for adulthood. The good and the bad news? There is no road map for what comes next. I know because 10 years ago, my son graduated from high school. Two years later, I searched desperately for that road map because he didn’t seem to be moving forward. Nine years after that, I realized that my family had cobbled together a hard won road map of our own.

Sure, there were days when we flew by the seat of our pants, dark nights when we didn’t have answers for the questions we’d learned to ask. We also had days when everything fell into place or when someone reached out to say, “Of course I’ll help you!”

Part of our story was finding out that despite his Asperger’s Syndrome diagnosis, our son didn’t qualify for a service coordinator after high school. He was, however, eligible for educational funds which would one day be a fantastic resource.

But right out of high school, diploma in hand, all my son wanted was a job and a car.

That decision put into play thousands of steps and an infinite number of decisions bringing him to where he is today. Looking back on everything he’s accomplished, I see 10 surprising things that I believe every parent of an autistic teenager transitioning into adulthood should know.

1. Learn to outsource

Let technology and practical choices work for you. Outsourcing is a pretty savvy time saver plus it takes the drudgery out of some necessary chores. Be smart and teach this to your teenager.

I’ll never forget the look on my son’s face when he found out that he didn’t have to type his own resume. Don’t get me wrong. He assembled the content. I wrote it all down. Then we hired a virtual assistant to format and type it. Once we had the template stored in a computer file, updates were easy.

2. About those life skills

Don’t accept that developmental delays can’t be overcome. Sometimes, what works best for mastering a particular life skill is to let timing take care of itself.

When he was 22 years old, my son’s independent living skills were assessed as “severely delayed.” At that time, he’d been driving for three years, was doing his own laundry, fixing breakfast for himself and doing all of the outside yard work. Over the next 3-5 years, he figured out how to: repair the kitchen drain pipe without supervision, schedule his own appointments, establish a solid work history, plan and make dinner, and program the GPS app on his smart phone.

3. Networking is more valuable than ever

You have a network of family, friends and professional colleagues. Never shy away from asking for what you need. People are so ready to help you. If you haven’t already joined a local autism support group, now would be the time to do so. You’ll find parents who are exactly where you are. You can help each other. And, you can reach back to offer support to the parents with young children who are now where you used to be. If there’s no local support group, consider starting one.

4. Look for volunteer opportunities

One of the best reasons to volunteer is to become a part of something larger than yourself. You get to spend time with like-minded people who share similar values, make friends, learn new skills; become a better you. If your teenager shows no interest in volunteering the first time you suggest it, ask her again in six months.

Knowing my son’s love for dogs, I thought he’d jump at the chance to volunteer as a dog walker at the animal shelter. The first time I suggested this, he brushed my comment aside. The next time I asked, not only was he ready, he handled all of the details himself. Two years after he started, a full time position as a kennel attendant opened up. One of the employees he knew suggested he apply. So, he did … and, he was hired.

5. Own the journey

If you find yourself in a deteriorating circumstance, don’t waste too much time in negativity. Once the shock has worn off, identify the problem, and then come up with a work-around for the benefit of your teenager that includes professional etiquette.

My husband and I had no reason to suspect that our son’s first job would be a disaster. He’d worked with a social services agency that focused on helping “disabled” adults find employment. Three months into this job, we knew he was in over his head. By that time, the agency had closed its doors. The only support our son had was us.

We sat him down and explained how he could ethically quit this job. Friends of his suggested companies he could target which led to job interviews he set up by himself. When a second company made him an offer, company number one received his two weeks written notice.

6. Find the teachable moments when work-related communication breaks down

In a perfect world, people are thoughtful, kind and respectful. Sadly, we know this isn’t always true. Sooner or later, your teenager will come face to face with a rude coworker. The first time it happens will be awful because she won’t be expecting it. (No one does.) Help her to find the words to defuse the next encounter… because it will happen again.

On two consecutive Saturdays, my son arrived at work, clocked in, and walked into the main lobby. One of his coworkers, a woman in her early 60′s, got up in his face and yelled, “Where have you been? You were supposed to be here an hour ago!” He was devastated but managed to step back, quietly explaining that no one had revised his schedule for an earlier arrival time. Not only did she refuse to apologize to him, over the next two months, she continued to harass him about his job performance.

He had no idea what to say to shut her up, telling me that anything he said might be grounds for “insubordination,” which could result in his being sent home. We spent several weeks talking about the best way to handle this. What could he respectfully say to make sure that this woman never spoke to him like this again?

After coming up with a sentence I thought would work, we practiced until it sounded like a spontaneous remark. The next time he was paired to work with her, she verbally jumped him. Seizing the moment, he said, “Your language is unprofessional and I don’t appreciate being talked to that way.” Her jaw dropped. From that day forward, if she couldn’t say anything nice to him, she said nothing.

7. Should your teenager tell a potential employer about her disability?

I’ve had this conversation with small business owners, people who work in the mental health and social services sectors, my son and one or two human resource professionals. Every single one of them has agreed with me. What they’re in agreement on is that knowing makes it so much easier to adapt job training and ensures that there are no on-the-job misunderstandings. The HR people I’ve talked with are quick to point out that, legally, they can’t ask. But, they’re so willing to listen.

Quite frankly, when our son was 18 years old, we didn’t know to ask. My husband and I assumed that the social services agency helping him find his first job would handle that part. Remember, too, that he didn’t then (and doesn’t now) qualify for a service coordinator. I don’t know if having one would have automatically raised that question. It’s a hard question with no right or wrong answer. The “right” answer is what works for your teenager. Today, my answer, for my son (which he agrees with), is a resounding “Yes!”

8. It wasn’t a bad job—it’s a job that wasn’t a good fit for you

Expect that somewhere in your teenager’s future is a job that she’s going to hate or one that she will be woefully inadequate to do. It’s happened to all of us so the odds are excellent that it will happen to her. Be okay with this.

I understand why my son couldn’t stick around his first job after high school. He was 18 years old drowning in sensory overload. Three months was as much as he could handle before his survival instincts kicked in. When the emotional dust had settled, he was a little wiser about what jobs he didn’t want. Better yet, when potential employers asked him for the best and worst stories from his work history, he had the perfect “how I got hit in the head with a purse by a woman who wanted to get into the public rest room that I was cleaning” story to share.

9. Explaining scripts can help create reasonable job accommodations

Set aside the alphabet soup of labels and educational jargon you’ve collected over the years. Turn them into conversational language (scripts) to describe your teenager’s learning style and work habits. Come up with 1-4 sentences that describe 2-3 good accommodations for how a job can be adjusted to play to your teenager’s strengths.

Here are two scripts my son and I wrote that might work for your teenager:

A. “Having Asperger’s Syndrome does affect my work style and what I’ve found is that I’m a better employee when you know what this means.”

B. “A written to do list is better for me than verbal instructions.”

As my son talked with employers, he realized that the words “Asperger’s Syndrome/autism/on the autism spectrum” themselves weren’t as important as what he said next. His follow up sentence: “Here’s what you need to know about that ….” was the point in the conversation when the person he was speaking to leaned in and paid close attention.

10. Here’s your “secret weapon”

Explaining scripts are great tools but they’re not enough if your teenager struggles with communication. The ace up your sleeve is that she can bring someone to a work related meeting to “facilitate communication,” for her. This is what’s referred to as a “reasonable accommodation.” (And, we wrote an explaining script for this!)

In the American Disabilities Act (ADA), reasonable accommodations can include “… the provision of qualified readers or interpreters, and other similar accommodations.” An interpreter is that someone who acts as the communications facilitator.

My son successfully engaged the services of a professional facilitator twice. The first time he requested one because his inability to communicate effectively at work was hampering his job performance. This is the explaining script he emailed to the HR manager: “Part of my disability has to do with how communication happens when I’m in a group of two or more people. It’s hard for me to keep track of all the conversations and be able to participate if I have to process everything I’m hearing without help. I would like to bring someone to the upcoming meeting, as an accommodation to my disability, to facilitate communication.” (The language in this script is the outcome of a conversation between an employee of the Mental Health Association and me.) The second time my son needed guidance in conversational support, he asked that same facilitator to attend a meeting with his vocational caseworker.

One day at a time is how my family built our road map. You’ll build yours the same way, maybe even faster using some of my 10 surprising things. Expect detours because detours are the spice of life! Be patient, remembering that this is not a race. Don’t ever settle for the expectations that someone else may have for your son or daughter. Believe that your teenager’s best days as an adult are still to come.

Photo Credit: Jens Schott Knudsen

Are you the parent of a graduating autistic teenager? Share with us your thoughts in the comments section below!
Hensel_PRrKathy H. Porter is a freelance writer, author and head cheerleader for her amazing son. She grabs inspiration from a background that includes 14 years of business experience and 17 years as an educator. Her latest project? Crafting work-related “explaining scripts” for autistic adults. Join her newsletter to find out when her next article will be published and to discover more useful on-the-job strategies for autistic adults. Follow her on Twitter: @kathyhporter

 

Does All Mean All? This Parent Doesn’t Think So

allmeansall

By Linda Mastroianni

A version of this article was originally published at speakingautism.ca.

Editors Note: If you are an inclusion advocate, you are probably cringing at the title of this post. I understand…this site normally posts articles that are supportive of inclusive education. Yet, I think it is important for parents and educators to listen to each other and there are no doubt many parents that will find this post is closer to their experience than anything else they will be able to find in our archives. So it is in this spirit that I am sharing this article with you. I want us to be realistic about the challenges of inclusive education and admitting that inclusion is not available to everyone is not the same thing as saying that is not possible or the right thing to do.

There was a time when I wholeheartedly believed that inclusion into a mainstream school for my autistic son was not only the best option but, in my mind, the only option.

I believed that if I kept him out of mainstream schooling it would be like working in reverse for him.  It would not be working in a positive, forward motion for him.  If I want him to integrate into society as an adult then the integration must begin as a child at school, with his peers, his teachers and the first real community that he will experience outside of the family unit.

This belief that I carried with me, this certainty and affirmation was deeply engraved in my mind.  Even as I was looking for a school that would best compliment my son’s special needs, my thoughts and feelings about mainstream schooling never wavered.  I found the best school for him and I ensured he received the proper amount of support he needed to learn and succeed.

This process of learning and growing was so much more than just academics.  This had to include growth on a social level as well.  It had to do with seeing his abilities and building on those skills; listening and respecting his voice even when he was silent; having him feel safe when things around him became overwhelming and understanding his behavior as a form of communication.  So many different aspects came into play when making my final decision on the right school for him.

We were extremely fortunate to have teachers and aides that believed and respected him.  They genuinely cared for him and always managed to push him a little outside of his comfort zone all the while respecting his capabilities and difficulties.    This is not to say we didn’t have daily struggles and challenges, we did, but as a whole, Emilio did extremely well and he was happy.

And in a blink of an eye, he was now in 6th grade; one year before junior high.   It was time to start looking for a school again that would work for Emilio.   A school that would also see his potential just like his previous school had done.

That’s when reality slapped me in the face a thousand times over.  Every mainstream high school I visited felt like a shark tank.  I already knew, just walking into the schools, that none of them were suitable for my son.  I met with the principals and teachers, we went over the program they offered, I asked some questions but all of it didn’t really matter.  They could have had the best possible program for him; it still would have been the single worst mistake I could have made for him.

And so I turned to my only reliable resource I had at that time, Emilio’s older brother.  I asked him “Do you think Emilio would do well at your school?  Do you think he would be bullied?”   Before I could continue with my arsenal of questions his response stopped me cold.  “Mom, Emilio would be a prime target.  No, this isn’t for him.  They would hurt him and I wouldn’t be able to protect him all the time.”

As I let those words sink in, it was becoming increasingly clear that my only option was taking Emilio out of mainstream school and placing him in a special needs school.   All the work and progress we made would now slowly be reversed, or so I thought.

I am ashamed to say it but as vehemently as I believed that inclusion in mainstream school was absolutely THE BEST route to take, I also believed that by sending Emilio to a special  needs school I would be lower the bar for him and thus, engaging the possibility of him regressing.

This canon-sized pill was a hard one to swallow.  Although I knew deep in my heart that a special needs school would be best for Emilio, (in comparison to all the other high schools I visited) sending him to such a school felt like I was receiving his diagnosis for the second time.  And it shook me to my core.

When I dropped him off at school on that very first day, I waved goodbye as he tearfully walked into the building.  I sat in my car and sobbed and sobbed.  I questioned what I had done.  Was this really the right choice?  Maybe I should have given the mainstream school a chance.  Try it out for a few months and then see.  I wrestled with these feelings for a month and I knew I still had a chance to transfer him if I wanted to.

But then I began to notice something.  Emilio was never sad about going to school.  He was always happy and ready to go.  Although he wasn’t able to tell me what he did during the day, the communication journal that the teacher provided told me how his day went.   On occasion I would spend the day in his class and observe.  What I saw overwhelmed me.  Emilio was coming out of his shell.  He was engaging more with his classmates and his teacher.  Here, in this school, with all these children having different abilities, some verbal some not, there was no difference.  These students had no limits.  These students, in their eyes, and in ours, were all the same.  Here, there were no labels, no box to fit into.

As I sit here today, going over my son’s IEP I am extremely grateful for all the progress he has made.  I look back and see how far in our journey we have traveled.  Looking ahead, I can only imagine how glorious it can be.  I am thankful for everything.

I once believed inclusion into mainstream school was the only way to go, I now know better.  It’s not for everyone and where it might be beneficial for one student, it isn’t for everyone.  I also know what works today isn’t guaranteed to work tomorrow.

Photo Adapted from Mr. Ducke.

Linda Mastroianni is founder of www.SpeakingAutism.ca. She provides support, resources and information to families and individuals living with ASD. She has two sons, the youngest having classic autism. She is a certified autism life coach helping families and individuals living with ASD. She blogs about the triumphs and challenges of her 14 year son and she is also a blogger for Huffington Post Canada.

Think Inclusive Podcast #007: Who Cares About Kelsey? with Dan Habib


http://www.flickr.com/photos/patrikmoen/128870862/sizes/z/in/photostream/

Recording from my living room in beautiful Marietta, GA…you are listening to the Think Inclusive Podcast Episode (007). I am your host Tim Villegas. Today I will be speaking with Dan Habib about his new film Who Cares About Kelsey? **You may be familiar with Dan because of his previous groundbreaking documentary about his son “Including Samuel”** The film will be broadcast on public television beginning the weekend of September 28th. In addition to the film there are 11 mini-films available to watch on the website: WhoCaresAboutKelsey.com that support the message of inclusion and positive behavior support. Dan and I talk about Positive Behavioral Interventions and Supports, the importance of leadership in systems change and the all important question…who we think is going to win the World Series? So without further ado…Let’s get to the podcast…Thanks for listening.

Pin It on Pinterest