Tomorrow Is Too Long to Wait for Inclusion

Solutions To Help Educate Young People With EBD

In almost every classroom there are children with behavioral challenges. Here are some solutions to help educate young people with EBD.

Do you know that it is almost certain that in every classroom you enter in the school system there is a learner struggling with a condition called Emotional and Behavioral Disorders (EBD)? The unfortunate thing about this scenario is that in most cases, such students are never identified. They may be given other labels such as dull, lazy, on uncooperative. If not addressed, problems caused by such learners can make the work of the teacher challenging and disturb other learners. This is the reason why there is a need for smart solutions to help educate young people with EBD.

The aim of this article is to look at this problem in depth to try and solve the misunderstanding associated with it. The discussion will start by looking at what EBD is and then go on to discuss some ways by which learners with EBD can be educated in the modern classroom. Since the problem can affect kids, teenagers, and adults, it is important to look at solutions for all these groups. Educating such learners can present challenges which, when correctly identified, can be mitigated.

Defining EBD

Experts indicate that attempting a definition of EBD, which is sometimes known as Emotional Disturbance (ED), is quite difficult because it is a misunderstood phenomenon. For example, one question frequently asked is how emotional and behavioral disorders can be distinguished from a behavioral disorder. Even though it may be difficult to come up with a scientific definition, it is easier to pin down some of the physical behaviors that define this problem.

While all students in the classroom will exhibit typical daily behavioral problems, and sometimes even dangerous ones it is not all of them who suffer from EBD. A young person with EBD would usually exhibit what is known as antisocial, externalizing, or internalizing behaviors.

Externalizing Behaviors

When a learner constantly gets out of their seat for no apparent reason, curses, and yells at anybody who crosses their path without provocation and is disturbing to peers, that learner is showing externalizing behaviors. Other symptoms of this problem are exhibited in the student ignoring instructions from the teacher, constantly hitting and fighting with other students, complaining or excessively arguing and failing to comply with directions. The signs above do not represent all the behaviors that should be watched for. Others such as destruction of property, failing to complete assignments, stealing, lying and throwing temper tantrums should also be noted.

Internalizing Behaviors

While some young people suffering from EBD may show the signs described above, others will show the exact opposite while still suffering from the same problem. They exhibit a very limited need for social interaction with others. Such children’s behavior is defined as internalizing.

While it is easy to ignore such children because their behavior does not present a threat to others, doing so endangers their development. If a child is not interested in playing with other children their age, lacks the necessary social skills required to make productive friendships, and often finds refuge in outlandish fantasies and daydreams, they may be suffering from EBD. Other behaviors indicating the prevalence of this problem in a young person can include being afraid without due cause, always complaining that they are sick or have been injured, and sometimes just looking depressed.

Possible Problems Educating People With EBD

As can be seen from the definition above, there are serious problems associated with attempting to educate learners with EBD, the common model of learning and teaching is one that depends on classrooms, and lecture theaters having learners who follow certain regulations about behavior. This is exactly what people with EBD do not do very well, and this represents massive problems for the teacher, the learner themselves and the other students in the classroom. This is the reason why children with this disorder tend to have a high chance of leaving school prematurely, ending up in jail, going into both drug and alcohol abuse, living on the margins of society and eventually dying early.

The main problem when educating learners with EBD is that they tend to perform below their grade level at a particular time. They find it difficult to read and perform mathematical calculations. Learning depends on learners being willing to corporate with the teacher, the rules, and needs of other students. Experts also indicate that such learners’ behavior interferes with their ability to learn the skills needed for productive scholarship and therefore tend to score very low marks in intelligence tests.

Educating Kids With EBD

While Children may suffer from EBD, they still need to be educated. A few things can be done by the teacher to mitigate this challenge including ensuring that class rules and activities are maintained clear and straightforward. Learners, especially those suffering from EBD, struggle with rules that are too demanding and complicated. The teacher can attempt to keep standards in the classroom broad and minimal. For example, the teacher can train the learners to arrive on time, be polite and respect the needs of others. They can then emphasize these rules until every student internalizes them.

Teaching activities should also be simple and clear. When the teacher uses events that are clear and simple, learners with EBD are given a chance to be part of the learning. This allows the learners to participate and interact with the activities of the lesson. This makes them feel that they are a part of the class.

Teaching Teenagers With EBD

When it comes to teenagers, the strategy is the same as with kids but should be made suitable for their age. Since teenagers with EBD generally lack the emotional balance required to concentrate for long periods of time, teachers should ensure that lessons have some small breaks to help bring such learners into the lesson.

If the teacher starts to feel that some of the learners are starting to fall behind in the lesson, they should stop teaching and allow them to catch up. Sufficient time should also be allowed for such learners to finish their assignments. Allowing for physical activities will give learners a chance to use their energy for something productive and controlled.

Education For Adults With EBD

It is probable that people with EBD will need to be educated later on in life when they are adults as the chance that they would have left school earlier is quite high. The most important thing to remember when dealing with such adults in the classroom is to understand the need for motivational strategies. Success should be celebrated appropriately. Educators should allow such learners to make decisions about their learning and be part of setting the rules.

How The Education Approach Differs When Educating People With EBD

The discussion above shows that educating learners with EBD is something that should be approached in a different way from educating everyday learners who do not suffer from such disorders. Teachers of such learners should always understand that these learners are slow and therefore lessons should be planned with them in mind. The teaching should be slow, and when there is a need to stop and allow these learners to catch up, the teacher should allow for this time. Teachers also need to ensure that their instructions are clear and simple.

Programs For EBD Learners In Different Countries

Different countries have various programs aimed at helping learners with EBD to get alternate learning. Such services provide therapeutic services to such learners. In the United States, such learners can benefit from The Elementary Learning Program, the Secondary Alternative Learning Program, or the Secondary Transition Program.

In the United Kingdom, learners can attend one of the many special needs school specifically dealing with learners who face such problems. Parents can check with the education departments in their countries to identify special schools in their communities that offer services for learners with EBD.

Learners with EBD attending colleges of higher learning can find it difficult to cope with the workload required in higher institutions of learning. This is made worse by the fact that higher intuitions of learning are not designed to deal with students who face these challenges. This is when those essay writing services become useful. Students can order papers in subjects that they are struggling with. These papers are then written by professionals who will help the learner to understand what the requirements of the question are. Using the custom writing services could be the difference between learners suffering from EBD getting to complete their qualification and ending up in the streets with no education and work.

Having emotional and behavioral disorders should not mean that a learner should be condemned to a lack of education. There are some things that can be done by the learner themselves, the teachers, parents and government departments to ensure that such learners do get an education. If this is not handled with care, such learners end up living on the fringes of society, being involved in drugs and dying prematurely.

Photo Credit: Hans Splinter/Flickr

Tia Moreen is a writer and traveler, who is currently running a small business and works as a blog editor at EssayHub. Loves bookcrossing and cooking.

 

Source: Solutions To Help Educate Young People With EBD » Education Press

What Inclusion Means to Me

what inclusion means to me

By Sue Robins

Recently, I was asked to speak to all the teachers at my son’s high school about “What Inclusion Means to Me.”  There would be about one hundred educators in the audience for their professional development (PD) day.  I sweated out my approach, talking to the special education teacher who had kindly recommended me, the physics teacher who was the organizer, and many families who had kids with differences in schools across the country.  I was desperate to understand my audience, not to misstep, to represent other families well, for I had a lot of skin in the game.  The high school I was speaking at was where my son Aaron would be for the next six years.  I could not screw this up.

I had spoken once before to an audience of parents and teachers on this same subject, almost three years ago in Alberta, Canada.  My stumble then was not to include any research about the other kids in the school – the ‘typically developing’ kids, many of whom were traveling on a strong academic path.  One mom had angrily protested from the back of the room, “your kid is taking away from my kid’s teaching time!”  I have recognized over the years that it is crucial to address barriers and concerns that the audience is holding early on in the presentation, for if you don’t, they hang onto those concerns during the entire talk, and this is a barrier to the listening.

This time I was more grizzled and wiser (but alas, still not perfect – is there such a thing?).  I drew upon others for expertise in my talk.  I don’t know one thing about adapting or modifying curriculum, so I showed Shelley Moore’s excellent bowling video.  I leaned on Ian Brown’s wisdom about the value of people with disabilities.  The moms from my Family Inclusion Group Facebook page kindly offered up some beautiful quotes about our kids being brave and presuming competence. I was very aware of not being self-serving – not only concerning myself with my own son’s experience but with his colleagues’ experiences, too:  those who used wheelchairs, those who were non-verbal, those identified with ‘behavior’ challenges.   I had many people behind me in spirit for this extraordinary opportunity:  for a mom taking up a morning in a high school’s PD day is a rare sight indeed.

And what does inclusion mean to me?  In the end, I talked about our journey with Aaron. I spoke about when he was first diagnosed (the baby we expected was not the baby we got).  I addressed my struggles with my fears about people with disabilities when Aaron was born, embedded in my head from my junior high days in 1974. I acknowledged the good work teachers do – how busy and exhausted they are too and asked them to reflect on why they chose to teach.  I talked about how inclusion was so much more than academic inclusion inside a classroom, how it was about inclusion in the hallways, at lunchtime, at school events, in sports, in extra-curricular activities.  I invited the audience to think of one way educators and the other students could include the kids in special education in the school, no matter how simple:  learning the students’ names, giving high fives, starting up a Buddy program, picking one thing from their class lesson to teach them each day.

My intention was to touch hearts to change minds.  My key messages:

-the value of children with disabilities (the disabled do the work of love, says Ian Brown)

-expanding the definition of diversity to include different abilities

-to point out how we are not preparing the high-achieving students for the real world if they do not know people who are ‘the other.’

I had to pause a few times during the talk to catch myself from crying.  This topic is deeply personal to me, as Aaron’s school experience is everything to us.  We chose to live in our particular school district.  We bought a condo close to the school.  I resigned from my job to be more visible and available to support his school experience.

Scanning the audience, I knew others were crying too.  Maybe they had someone with a difference in their family.  Maybe they were remembering the feeling of being left out.  Maybe they were triggered to recall why they chose to teach.  In the end, the applause was more than polite, and I had a patient line of teachers waiting to chat with me.  It tears me up to think about how much these educators want to reach all children, but sometimes they just don’t know how.  This desire is everything.  Change happens with just one step at a time – the first step is the most important one. This is the beginning of belonging, one high five at a time.

Inclusion to me means finding love + belonging.  It means taking the time to understand another person’s perspective, to feel empathy, to demonstrate compassion.  These are the same messages I share with healthcare audiences, as I’ve realized that these concepts are profoundly universal.

In the end, for me, everything always circles back to Raymond Carver:

And did you get what

you wanted from this life, even so?

I did.

And what did you want?

To call myself beloved, to feel myself

beloved on the earth.”

― Raymond Carver, A New Path to the Waterfall

Photo Credit: Bradley Huchteman/Flickr

sue robinsSue Robins is a writer, speaker, and mom of three.  Her youngest son Aaron is 13 years old and has Down syndrome.  Her essays about motherhood have been published in the New York Times, Huffington Post and Canada’s Globe and Mail newspaper.  Sue is passionate about families who have children with differences, coaching families to tell their own stories and nurturing gratitude and compassion in health care (and now education) settings.  She is also a partner in Bird Communications, a health communications company in Vancouver and Edmonton.  She can be found on Twitter and Facebook as @suerobinsyvr and her blog is suerobins.com.

What Do Successful Teachers Do with the First Hour of Their Work Day?

teachers; a numberless clock mounted on a plain brick wall

By Megan Gross

Inspired by a recent Fast Company article on the habits of successful business folks during their first hour of work, we asked our colleagues about their morning routines. Although the colleagues we surveyed work in different schools and states, their morning activities reflect on the skills essential to the role of a successful teacher: communication, collaboration, and preparation.

What do successful teachers (inclusion, special/general education or other educators) do during their first hour of work?

1) Review calendar & schedule for the day

One of our colleagues starts the day by asking, “Is there anything special or potentially difficult happening today?” as she reviews her calendar. She looks for schedule changes, such as assemblies, fire drills, or special events on campus, and if there are any paraprofessionals who called in sick. With this information, a student’s visual schedule can be updated to reflect the day’s activities, adjustments to staffing can be made, or time can be allotted to orient a sub. Several of our colleagues also have staff communication binders and these are updated every morning to include class-specific or school-wide activities, changes in the schedule, absences, or other information to assist paraprofessionals and inclusion teachers in keeping everyone in the loop.

2) Check email

Unlike the technology and business gurus profiled in the Fast Company article, teachers make a point of checking emails before the school bell rings. Some teachers quickly scan their email looking for anything that might affect the daily schedule, information from parents, and flag emails to respond to later in the day. Others find this is the only quiet time in the day to thoughtfully respond to a parent, remind a teacher about accommodations, or send out invitations to IEP meetings. For many, the mind is the freshest in the morning, making email response one of the most logical places to start.

3) Check-in with teachers or paraprofessionals

Many of our inclusion teacher colleagues are running between classrooms for the majority of the school day, so they take advantage of the time before the bell rings to talk with colleagues. Some may meet with their paraprofessionals about the upcoming school day while other teachers discuss student needs or classroom supports with general education teachers. These morning check-ins may be the only time staff interact with each other, besides passing in the hallway, before the school day is done, so teachers make an effort to talk to staff and build community one “Good morning” at a time.

4) Finish prepping a modification or paperwork

Inclusion teachers often allow time in the morning, before students arrive, to finish up a small project from the night before. Accomplishing one small task before students arrive helps one of our colleagues “dive in” to the school day and also prevents her from staying at work all night. A small task might include completing IEP data sheets or paperwork, creating modified curriculum resource for a student, or the occasional mad dash to the copy machine.

5) Morning Joe

No. Not the MSNBC show. Overwhelmingly…Coffee was a huge part of an educators morning routine. Whether it was brewed at home, taken from the staff lounge or picked up at a drive-thru on the way to school, teachers love their “black gold.” We don’t know what your morning routine is for your first hour of the day, but it is of vital importance that you have some of that time carved out for yourself just to breathe, relax, and meditate on the day at hand. Sometimes, that is the difference between a productive day and a day where you feel like you are running behind.

Photo Credit: Lee Haywood/Flickr

Megan Gross is a special education teacher and inclusion specialist in California. She has facilitated inclusive education in K-12 classrooms. Megan is the co-author of The Inclusion Toolbox: Strategies and Techniques for All Teachers and ParaEducate, a resource book for paraprofessionals and special education teachers. She currently teaches high school and is the co-advisor of her campus’ Best Buddies club. Megan lives in San Diego with her husband and two children. Follow Megan on Twitter (@MegNGross).

The Pursuit of Inclusion: Blazing a Path for Our Son with Prader-Willi Syndrome

pursuit of inclusion; a dirt path running a lush forest

This past year, our son Dean, who has Prader-Willi syndrome, began his preschool career at the ripe old age of 3. Dean, like others his age, was in a “natural environment” program, which met at a daycare with typical and special needs peers. In this program, a parent or caregiver is required to attend with each student and is there primarily to observe. This experience and others involving mother’s groups, playgroups, and outside educational programs, has given us great insight into what is best for Dean.

I love the special needs environment because they really “get” some things, like how someone with muscle tone as low as Dean’s might need extra support to sit in a chair so they can concentrate more on work than on not falling over. They used a slant board for Dean to view his work at eye level so it would be easier from visual-spatial and fine motor standpoints. And having a PT, OT, and SLP at the ready – for a quick consult even if Dean doesn’t receive their services – is a dream. A relief. The smaller child-to-teacher ratio is necessary for the amount of help Dean needs to be most successful.

And yet, we find that typical environments tend to have more of a healthy fear of specific information we might have about Dean or PWS. They don’t assume they know how certain meltdowns or specific speech issues will play out. They’re not jaded by the usual categories of special needs and approach Dean more as an individual who is perhaps a bit more complex than is their average student. As with our doctors, babysitters, caregivers, or the average onlooker, we find so helpful those who seek to learn rather than those who ignore the pertinent first-hand information we have for them and assume that they know best.

For this coming year, our county does not offer what we are really looking for, which is an inclusive classroom. These scenarios exist in nearby counties, but not in ours. The recommendation of Dean’s IEP team (and something we wanted in part) was a “center-based” (special ed.) classroom. But I asked about opportunities for Dean to interact with typical peers, and I was told that this was only a possibility. For us, leaving this up in the air was surprising, not to mention… unacceptable.

I told his teacher that we were thinking about doing a few days in a typical preschool, and then the other days at center-based. She referred to Dean’s IEP and mentioned that if he wasn’t at center-based every day, he might not be able to meet all of his goals. She said, “You have to decide what’s a priority for you: academics or socializing.” My head spun as I thought about what she said, for it never occurred to me that this was an either/or issue. We want both for Dean, and we weren’t going to get it with what was being offered to us. So we decided to send Dean to a typical preschool two mornings a week, and to center-based three times a week. As we have done for him countless times in these past three years, we are blazing our own path. To do anything less would be a disservice to our sweet Dean, no matter what the learning environment.

Photo Credit: Nicholas A. Tonelli/Flickr

Editor’s Note: This post was originally published in 2012 and has been updated with a new featured image, category, and tags.

Ali Foley Shenk lives in Richmond, VA with her husband Bob and their three boys: Cole, Dean, and Emmett. Ali writes, mostly on her blog at divingintothewaves.com, and is also a freelance copy editor. She also volunteers with the Foundation for Prader-Willi Research (www.fpwr.org).

You Just Can’t Take Me Anywhere!

can't take me anywhere

My parents used to say, “We just can’t take you anywhere,” meaning I could not be trusted not to cause a “scene” – and for parents who valued appearances in society as they did, this was quite the denouncement.

It has only been four months since I emerged from extreme isolation and denial of my social difficulties – the way I dealt with it was by NOT dealing with it: staying isolated and alone, the way I like it. I honestly prefer to be alone, and, until recently assumed most autistics were like me.

NOT so. Even some of the most severely impacted are not as misanthropic as I; in fact, they are surprisingly affectionate. I am beginning to consider perhaps my hermit-like qualities are not even related to autism at all. However, the fact remains – I am still as averse to being with other people for more than an hour at a time, maximum. I simply do not LIKE them when I am required to be in their presence. They irritate me supremely and my hostility and aggression, when irritated, is still not completely under my control. I no longer profess to “hate” them as I did vehemently when younger (and before Buddhist training), but still resent any occasion where I must interact face to face, unless it is a structured activity with clear rules, like sporting activities or firefighting. One on one contact is preferable, as there are not as many variables to attend to, but I prefer digital and online communication – I express myself best there and do not get as frustrated, as I control the interaction and can step away when necessary when getting frustrated.

As a child and adult (up until 1999, when my last documented episode of public aggression occurred), I was extremely aggressive, and, for this reason, was placed in very restrictive settings where they could physically restrain me. I saw no reason not to be so violent until multiple arrests and beatings from the police forced me to re-evaluate my public lashing out. At that time, I discovered Buddhism and its practice of non-violence and rose to the challenge of changing my behavior. I was successful; however, my primary strategy was to limit my exposure to provocative situations, which meant not venturing into public except when I most others are not present- i.e., never being out in rush hour, going to an all – night supermarket at 4 AM, etc. This did not completely curb my physical and verbal assaultiveness – as recently as a few weeks ago I hit my support person as he was attempting to restrain me from engaging in another obnoxious behavior – disruptive yelling late at night. The difference is now I feel remorse and truly do not want to be this way.

Here is an article on aggression in ASD: Aggression in autism spectrum disorder: presentation and treatment options

The article above spends much time discussing antipsychotic medications, which have been tried on me, to no avail. First off, I am extremely sensitive to the neurological side effects such as Parkinsonianism/Extra Pyramidal Symptoms. My diaphragm seizes up, and I cannot move the muscles needed to breathe. This makes antipsychotics potentially deadly for me. They also did not ameliorate any of my behavior issues, and since I do not have a thought disorder (schizophrenia), they are useless and harmful for me. Ritalin and the stimulants, which I was on for many years, also do not help in the long run. Neither do any of the other classes of drugs and, believe me, I have been on them all. Buddhist practice and the willingness to change are the only things which have worked for me, and for that I am grateful.

Thank you, Autistry Studios, for helping me seek resources which may help with self-control, like this one:

aggression2

It may seem simplistic, but I have never attempted anything like this. Only the challenge of following the Buddhist precepts has inspired me to try. When others were trying to control me, I resisted strenuously -and my will is incredibly strong.

I am doing better regarding aggression, but have a long way to go – had I not ventured out on those two days I may still be under the illusion I now have it all under control.

On the bright side – I no longer fight with strangers – nearly all aggression is verbal now, and even that is infrequent as I know my triggers and usually avoid them. I also did not wear my weighted vest, which DOES help calm me -and both days I FORGOT MY SQUISHIES! It is remarkable how much these items calm me. It is also remarkable how often I forget this.

As far as lashing out at my support guy – I AM sorry, and even that episode was minor.

Photo Credit: Ben Seidelman/Flickr

Source:  Just Can’t Take Me Anywhere! – Autistry And Me

I am Christian Espicha, an adult woman with autism. Though diagnosed as a young child with autism, partly because I also possess a genius IQ, I did not receive appropriate services until recently when I became a client at Autistry Studios in San Rafael, CA. Recently, at age 45, I was the oldest member of the Humboldt County Structure Firefighting Academy to graduate. Also, I completed EMT training and worked as a firefighter/EMT in Trinity County, California. I performed, with my fellow firefighters, mountain rescues, and recoveries assisted the Forest Service with fires in the Trinity National Forest and assisted with water rescues/recoveries on the Trinity River. I am also a writer and artist. See my website at https://www.autistryandme.wordpress.com and autistryandme on Facebook and follow me @Screenshotaut on Twitter.

 

12 Actors Changing Disability Representation on Television

12 Actors Changing Disability Representation on Television

The awareness of disabilities and long-term illnesses in the media has risen considerably in the last few years, where actors with disabilities are making a positive impact and landing key roles regardless of their disabilities. There’s an ongoing argument where non-disabled actors are playing disabled roles, even though real disabled actors are available, which is particularly evident in Hollywood films. So within this feature we’ve specifically focused on television media, as there’s a definite increase of disabled actors now landing significant roles in television.

Although the public shouldn’t necessarily look to the media to learn about these disabilities, it’s certainly raising the awareness and helping to dissolve stigmas around the subject. The lack of disabled actors in television and film is something which has improved considerably over the years, however still needs changing and is an area which needs much more discussion and attention.

Good news is that there are already quite a few channels out there trying to make those changes, including the BBC, and some remarkable television shoes that are making waves in the media. A recent one to watch out for is ABC’s new comedy “Speechless” which follows a family of five with a special needs child.

“In July 2014, BBC Director General Tony Hall pledged to quadruple the number of disabled people on screen by 2017.”

This feature outlines 12 actors with disabilities and long-term illnesses that are making a positive awareness in the media with their outstanding performances in television phenomenon such as “Game of Thrones,” “Breaking Bad,” “Stranger Things” and more. Check out which actors are on the list, as well as an infographic which presents some statistics on the employment of disabled artists within television.

Peter Dinklage

Show Spotlight: Game of Thrones

Disability: Restricted Growth (Dwarfism)

Peter dinkllage

Award-winning actor Peter Dinklage has earned an incredible place in the media spotlight for his outstanding performance as Tyrion Lannister in HBO’s “Game of Thrones” television series.

Winning both a Golden Globe and Emmy Award for his performance as Tyrion Lannister, he’s created a positive awareness around Restricted Growth (Dwarfism), especially not only being part of such a popular television show but playing such a major character within the show.

This is an incredible example of how a real disabled actor playing a pivotal role can have such a positive impact and awareness and that professional actors should be considered for these roles regardless of their disability or long-term illness.

Rather than playing a typical comedy role which Dwarfs are usually often seen playing, Peter has made a breakthrough for both disability in television and increased the awareness of Dwarfism.

Further reading links:

RJ Mitte

Show Spotlight: Breaking Bad

Disability: Cerebral Palsy

RJ Mitte

Looking for acting opportunities where his disability would serve to educate viewers, actor RJ Mitte landed his most iconic role to date as Walter “Flynn” White Junior on AMC’s Emmy and Golden Globe Award-winning “Breaking Bad” series.

Living with Cerebral Palsy, just like his “Breaking Bad” character, RJ Mitte is on a mission to get more disabled people on TV and to increase the awareness. Unlike his character Flynn though, Mitte doesn’t need to rely on any walking devices and RJ had to learn to slur his speech to create a more dramatic version of his disability.

A celebrity ambassador for United Cerebral Palsy, RJ Mitte is an inspiration around the world. He’s engaged in public speaking, has been seen gracing the catwalk and was also part of Channel 4’s Paralympic coverage back in September this year.

“He hopes seeing more disabled people on TV will increase understanding of disability and make people more comfortable around disabled people.”

Further reading links:

Gaten Matarazzo

Show Spotlight: Stranger Things

Disability: Cleidocranial Dysplasia

Stranger Things

Bringing awareness to Cleidocranial Dysplasia, a rare genetic disorder, Gaten Matarazzo is an upcoming actor to watch out for! Known for playing Dustin in Netflix’s cult hit series “Stranger Things,” he certainly holds his own as one of the coolest characters.

“It’s a condition where you’re born without your collarbones,” he told Ross. “I don’t have any. It affects your facial growth, your skull growth, your teeth — that’s why I don’t have any [teeth], these are fake right here. I have teeth, but they’re all baby teeth. I need a lot of surgery.”

At just 14 years old, Gaten is making a positive awareness around his disability at such a young age by speaking openly about it on chat shows and other media interviews. Although his disability isn’t directly related to his character in “Stranger Things,” Gaten is demonstrating that a professional actor can be cast for a key role despite their disability. With season 2 of “Stranger Things” on the horizon, there’s plenty more of this charismatic little start to come.

Further reading links:

Russell Harvard

Show Spotlight: Fargo

Disability: Hearing Loss

Russell Harvard

Born with Deafness, Russell Harvard has been acting since a child. Landing his first villainous role as Mr.Wench in “Fargo” the crime-drama television series, he was happy to play somebody that wasn’t himself and play a character that wasn’t defined by being deaf.

Although Russell Harvard’s role in “Fargo” isn’t a positive character to look up to in the show, since he’s a bit of a villain, the idea that Harvard can play a villain (like any other professional actor) is a step in the right direction for showing that actors can land and should audition for major roles regardless of their disabilities.

Further reading links:

Sarah Gordy

Show Spotlight: Call The Midwife

Disability: Down’s Syndrome

Sarah Gordy

Sarah Gordy, a professional actress, dancer, and model with Down’s syndrome, is best known for her high-profile role as Sally Harper in the BBC’s “Call The Midwife,” a television series set during the 1950s. As well as BBC shows, Sarah has acted in short films, radio dramas, commercials and many theatre productions.

With ten years experience on stage and television, her aim is to play roles where people see her as a woman and actress first rather than just someone with Down’s Syndrome. The BBC’s “Call The Midwife” was a major turning point where they didn’t see her as just an actress with a disability; they saw her as a woman first. Some of Gordy’s earlier accounts with the BBC weren’t so promising.

“She told Disability News Service that she was once informed by senior BBC executives “in business suits” that she was “not Down’s enough,” “not pitiful enough” and “too attractive” to play the part of a character with Down’s syndrome.”

This stigma around actors with disabilities needs to end. Someone with a disability like Down’s Syndrome needs to be seen in their right and for their acting talents, not just playing someone with Down’s Syndrome that viewers need to pity and feel sorry for. Sarah Gordy is making viewers look up to her as a role model and a confident and powerful woman.

Further reading links:

Colin Young

Show Spotlight: Call The Midwife

Disability: Cerebral Palsy

Colin Young

Co-star with Sarah Gordy on BBC’s “Call The Midwife,” Colin Young is a disabled actor with Cerebral Palsy. Making his debut in “Call The Midwife,” Colin played the role of Jacob Milligan who had an on-screen relationship with Sally Harper, played by Sarah Gordy who is an actress with Down’s Syndrome.

Although featuring two disabled characters having a relationship has been a massive breakthrough for disability portrayal and acceptance within the media thanks to “Call The Midwife,” both Colin Young and Sarah Gordy believe there is still a long way to go. All professional actors who are disabled should be getting cast for their talent and abilities rather than to just portray their disability.

Further reading links:

Michael J. Fox

Show Spotlight: The Good Wife

Disability: Parkinson’s Disease

Michael J Fox

Diagnosed with Parkinson’s Disease in 1992 at just 30 years old, Michael J. Fox has soldiered on with his acting career, showing determination and becoming a huge inspiration to other people with disabilities and health conditions.

Despite having Parkinson’s Disease, Fox has continuously shown commitment and motivation within his acting career and has successfully contributed to positive awareness around Parkinson’s Disease, by sending out the message that people with a disability or condition can carry out a relatively normal life and do things which they’re passionate about.

Landing his recurring role as the character Louis Canning, a cut-throat lawyer, in the CBS drama “The Good Wife”, Michael J. Fox was able to show that just because he’s an actor with a disability, that doesn’t mean he should have to play a role where he’s portrayed as helpless and needs sympathy for the viewers.

Further reading links:

Jamie Brewer

Show Spotlight: American Horror Story

Disability: Down’s Syndrome

Jamie Brewer

Model, actress and active member within the Down’s Syndrome community, Jamie Brewer has been shining the spotlight on Down’s Syndrome with positivity and showing exactly why people should accept such disabilities, especially within the media, and why disabled actors deserve the same opportunities to present their talents.

Making history on the New York catwalk in February 2015, Jamie Brewer was the first Down’s Syndrome model to walk at fashion week, thanks to designer Carrie Hammer. This was an incredible milestone for Brewer to be at the forefront of, and thus inspiring many others with disabilities.

As well as modeling, Jamie has also been getting a strong reputation for her acting within the television series “American Horror Story.” Playing a range of characters, which included some challenging narratives, the series helped to showcase her acting ability and versatility.

Further reading links:

Robert David Hall

Show Spotlight: CSI: Crime Scene Investigation

Disability: Double Leg Amputee

Robert David Hall

Robert David Hall is a disabled actor who is best known for his character on CBS’s “CSI: Crime Scene Investigation” television series. Being a double leg amputee in real life, David Hall plays the role of a medical examiner called AI Robbins.

Not always a double leg amputee, Robert David Hall was severely burned in 1978 from a car accident. After several months in a burn unit and double leg amputation, he now walks comfortably on two prosthetic limbs.

“A committed disability advocate, Hall has used his position to raise awareness of those issues that impact the quality of life for people with disabilities and recently joined the board of directors of the National Organization on Disability.”

Further reading links:

Lauren Potter

Show Spotlight: Glee

Disability: Down’s Syndrome

Lauren Potter

Taking on the character of Becky Jackson on Fox’s musical comedy show “Glee,” Lauren Potter was born with Down’s Syndrome and is helping to increase the awareness for people to look at an individual’s skills rather than their disability or health condition.

“Playing Becky on Glee was SO amazing. I had so much fun over the last six years. It was fun being so spunky and funny, but I also got to do some really dramatic and sometimes even sad scenes. Everyone in my Glee family was so nice and supportive. Because of Glee, I’ve gotten to do so many amazing things, and I’ve gotten to meet so many amazing people and speak out about things that are important”

Although Lauren has brought plenty of positive connotations for “Glee,” the show has also received quite a lot of negative reviews as well. Lauren’s co-star Kevin McHale plays a character called Artie who is in a wheelchair, yet he doesn’t use a wheelchair in real life. This just shows the negative impact that casting non-disabled actors for a disabled role can have, even though Lauren Potter has brought a considerable amount of disability awareness to the show.

Further reading links:

Liam Bairstow

Show Spotlight: Coronation Street

Disability: Down’s Syndrome

Encouraging actors with disabilities to follow their dreams, Liam Bairstow is most known for landing his role as Alex Warner on ITV’s “Coronation Street.” Born with Down’s Syndrome, Liam has had a major part to play when it comes to changing people’s perception of Down’s Syndrome and acceptance of actors with disabilities within television.

Making British history in 2015 for his role on “Coronation Street,” Liam Bairstow was the first actor with Down’s Syndrome to be cast in a British television soap and is certainly one to watch out for!

Further reading links:

Lisa Hammond

Show Spotlight: Eastenders

Disability: Pseudoachondroplasia (Restricted Growth) and Joint Hypermobility

Born with Pseudoachondroplasia (Restricted Growth) and Joint Hypermobility, Lisa Hammond is best known for her character Donna Yates on the BBC’s “Eastenders” series.

Hammond has made an incredible achievement for raising the awareness of Restricted Growth and Joint Hypermobility disabilities, although she has also sadly come under quite a lot of criticism for the role as well. Although Lisa is often seen in a wheelchair in real life, she doesn’t always need to be in it… which led to one of the episodes of Eastenders featuring Donna Yates standing up and out of her wheelchair, which resulted in quite a stir in the media.

“Lisa, who says she will walk in a scene if she feels able, added: ‘But if I can’t or pain levels are bad then I’ll use my chair. I’ve been shouted at. I’ve had people say, “Oi, why are you in a chair when you were walking on EastEnders last night?”

Although negative, the media attention which Hammond received should hopefully make people realize that not all disabilities are as they appear and just because someone might sometimes need a wheelchair, doesn’t mean they need to be in a wheelchair 24/7.

Further reading links:

The Employment of Disabled Actors Within Television

Disabled actors getting cast for a key television role because of their acting ability rather than their disability is the talking point and mission behind many disabled rights organizations.

Although the proportion of the employment of disabled actors within television has increased quite considerably the last few years, there’s still a long way to go. There’s still plenty of cases where able-bodied actors are being cast for disabled roles, rather than disabled actors. This is particularly evident in Hollywood films, however, is still very evident in television as well. Take a look at the below mini infographic which helps put this matter into perspective.

Sources used for infographic:

The Jumblies Project: an Interactive Sensory Story

the jumblies project

By Nicholas Cross, St. John’s School and College

Could You Help Bring the Jumblies to Life?

As a fundraiser I’ve helped bring some wonderful and hugely beneficial projects to life; from state of the art immersive theatres to seemingly impossible to run social enterprises. It’s a tough old job but means once in a while you come across a project so interesting, so undeniably inspiring that you feel a real sense of pride when you start bringing money in for it.

Right now that project is the brainchild of SEN provider St. John’s School & College and digital performance company Spectral Spaces, and it’s called The Jumblies Project.

Spectral Spaces presents The Jumblies from Jeb Hardwick on Vimeo.

The Jumblies Project Starts with a Poem

The Jumblies is a 6 stanza poem written by English artist, poet, illustrator and author, Edward Lear in 1871. Lear is best known for the use of literary nonsense in his writing, which soon becomes clear when but a few lines into the poem the fictional, and presumably very tiny, people called the Jumblies take to sea in a sieve on an adventure!

I won’t reveal too many spoilers but I can assure you it is imaginative, moving, entertaining and well worth reading.

This bizarre and amusing Georgian classic will be adapted by learning disabled pupils of St. John’s with the support of Spectral Spaces and performed at the Brighton Fringe Festival and Brighton Digital Festival in 2017. However unlike your typical, perhaps on occasion dull, school or college performances The Jumblies Project goes a few steps further. The performances will be enhanced and adapted to one of ‘sensory room-esque’ quality with an interactive app for the audience, OptiMusic light beams, movement triggered soundtrack, interactive walls, interactive floor, scent machine and lots much more!

It will take a good 18 weeks of hard work and preparation but most importantly be designed, created, produced, written and performed by 18-25-year-olds with complex learning disabilities, special needs and communication difficulties.

The Jumblies Project is an opportunity for our young people to show everyone out there that no matter your difficulties we are all creative, passionate, talented people and are more than capable of doing something to make our mark on the world. This is not just about putting on a performance unlike any other but about inspiring other young people and showing communities that no one is solely defined by a diagnoses and heck… why not go to sea in sieve (at least metaphorically.)

The project not only spreads a message of inclusivity in the arts, which is one of the hardest industries for any person to get a break in, but has core benefits for the young people involved. It promotes confidence, progresses their education, reduces challenging behavior, lets them experience something new and perhaps most importantly, shows them that their efforts are to be celebrated and applauded, literally.

We Need Your Help to Fund the Jumblies

Sadly nothing in life is free and this dream, from start to finish, costs £5,400 (~$6,800) to become a reality.

So, like any good fundraiser who’s been inspired by an amazing idea to help amazing people, I wondered if you would be as amazed and moved too.

In a risky move, that I’m hoping will make and not break this project, I have turned to conquer the tricky beast that is crowd funding. This, in a nutshell, gives anyone who is interested the chance to contribute financially and help bring The Jumblies to life. It seemed only fitting that a project aiming to spread a message of inclusion and equality should give people the chance to be a part of it.

Using Neighbourly, a crowd funding site targeted at businesses and individuals, we have summarized the project, explaining what we are hoping achieve and that the money, although significant, will be worth every penny.

There is also a rather enjoyable video (see above) that inspired the project and features St. John’s learners, St. John’s ICT Coordinator Dan Axson and Louis, Mark & Matt of Spectral Spaces giving a taster of what the performance would be like.

We are hoping people will make donations of whatever they can spare or at least share the page on their Facebook, Twitter, and LinkedIn accounts so even if you cannot donate you increase the chance of it being seen by someone who can.

We have already sourced £1,000 (~$1300) from an extremely generous charitable trust but there is a long way to go and not much time in which to do it.

So please click the link, be inspired, be part of something and help the 100+ pupils of a small learning disability college make an enormous difference to their own lives and hopefully the lives of so many others.

The Jumblies Project on Neighbourly: https://www.neighbourly.com/project/57ff9770c7ac8806c4fdbbc5/feed

Nicholas CrossNicholas Cross is a seasoned grant, community and corporate fundraiser for learning disability causes and is the Development Officer for St. John’s School and College. He’s been with the Brighton and Seaford-based SEN school, college and registered charity for over a year and sources the funds to pay for learning disability projects, equipment, and teaching resources.

He’s a writer for and co-founder of Brighton-based lifestyle blog Bright on a Budget and is an avid fan of Texas Hold ‘Em poker and world cinema. Follow Nick @nickthecross and follow St. John’s School and College @stjohns_sussex

Achieving Inclusion with Grit and Gratitude

scrabble letters spelling out the word grateful

By Laura Bratton

Just a few months before I started third grade I was diagnosed with an eye disease. My vision was deteriorating, and I would eventually become blind. So as I started the new school year, my parents were faced with a decision regarding my education. They were told that I would have to leave my current school and go to school in another city. Being a teacher, my mom knew that I was completely capable of staying in the same school. She knew that if I received the appropriate accommodations I could complete third grade just like everyone else. For example, by sitting at the front of the classroom, using large print textbooks, and a magnifier for worksheets I would be able to complete the assignments. My parents also knew that I would greatly benefit from being around all types of students; those without disabilities as well as those with different types of disabilities. So my parents were determined that I would stay in the mainstream school system.

The following is an excerpt from my book Harnessing Courage, which describes the impact of my parents’ decision to keep me in my regular classes:

“I will never forget speaking to a class of middle schoolers one year when I was home from college. Before I spoke, I was in the school office. A lady walked up to me and said, “Please tell your parents thank you for the work that they did.” I looked up at her, confused; I had no clue what she was talking about. I was giving the talk in a different school district than the one in which I grew up. She added, “Because of the work that your parents did for you to keep you in regular public school, countless other children who came behind you are also able to stay in public school.” I stood in the office of that school not sure how to respond. I replied with a simple, “Oh, that is great!” However, it just did not seem like enough. I was excited and touched to know that the bravery my parents displayed not only benefited me, but it also benefited many other children we will never know.”

I am grateful beyond words that I had the opportunity for inclusive education for two main reasons. First, I was able to receive the same level of education my peers received. Teachers expected me to perform at the same level as the other students. Yes, of course, I received the needed accommodations such as twice as much time to complete tests. However, once the accommodations were in place, I was held to the same standard. I learned that I could not use my blindness as an excuse for not performing at a high level.

The second reason I am grateful for inclusive education is because of the socialization I received. Being around students who did not have a disability as well as students who had different types of learning disabilities taught me how to advocate for my needs. For example, I learned how to ask a friend for help when I needed to find the correct lunch table in the cafeteria. I developed the ability to communicate my needs clearly so that I could interact with all students. Receiving the same level of education and socialization as other students gave me the tools I needed to live a productive and full life. For the gift of my parents advocating for me: I am grateful. For the opportunity of inclusive education: I am grateful.

Photo credit: EKG Technician Salary/Flickr

laura bratton

Laura Bratton was born and raised in South Carolina. She graduated from Arizona State University in 2006. In 2010, Laura was the first blind student to graduate from Princeton Theological Seminary with a Masters of Divinity. Laura is the pastor at Laurens Road United Methodist Church and founder of Ubi Global LLC. She is the author of Harnessing Courage. Visit Laura’s website at www.ubiglobal.org.

A Place for Parents: Autistics and Allies

Sticker of two people holding hands.

By Larkin Taylor-Parker

Disagreements between stakeholders of various kinds are fairly common in the disability community, but conflict plagues autism discourse. The place of parents is particularly contentious. As I prepared for this post, I glanced around the Internet for what had already been said. There are too many existing attempts to fix this with a blog post, or, worse, one that oversimplifies the conflict or makes a straw man of one side. I decided this would not be another iteration of an endemic, useless thing. As I read others’ thoughts on the subject, I happened on a year-old article called Who Should Lead the Autism Rights Movement? Instantly, I knew how to articulate the problem and solution.

The answer to that question is obvious: people whose lives are most shaped by society’s decisions on what to do with autistic people deserve the final say. Social change that undermines oppression has never been ally-led. Agency as charitable donation is a contradiction in terms. We must take it for ourselves, not wait until others deign to bestow it. The thrust of every argument I have seen against our leadership is that we are too disabled to have a say in our future. I see this sentiment often. It comes couched in sympathy, recommended for convenience’s sake, and presented in the tired terminology of a moldy eugenics textbook in my vintage and antiquarian collection. I have never seen these claims hold up to scrutiny. The arguments are full of transparent fallacies. Besides, Autistics and other people with disabilities are challenging notions of our incapacity in numbers hard to dismiss as anecdotal evidence. Given a measure of control over our lives, we usually improve them. We will always know more about how to do that than allistic* people. We know our priorities, experiences, needs.

Parents may not be able to set the agenda, but they have a natural role in neurodiversity and disability rights efforts. It is partly restraint. They can be quiet in our safe spaces and encourage others to do likewise. They can stop calling anyone capable of typing insufficiently disabled to have valid opinions. They can stop speaking for and talking over us. However, not everything we need from them is passivity. There are active roles no one could better fulfill.

The media asks them about autism before it does us. Parents have the opportunity to amplify our voices where they would otherwise be ignored, redirect questions, challenge purely negative perceptions. Parents can raise money for worthy causes and organizations. The silver lining of the Autism Speaks problem is that many learned fundraising. Parents can raise assertive autistic children with a healthy sense of self-worth. They can bring up kids who carve a place for themselves in the world and understand their right to be here. Parents can stand with autistic children and adults as we demand a fair chance at rich, full, dignified lives.

As parents work to ensure they are on our side, autistics should help. We must find a healthy middle ground between the extremes of ignoring ableism and writing decent people off for one ignorant word. This is more than being humane. It is pragmatism. We need allies more than most groups. At just over one percent of the population, we will never have the numbers to go it alone.

*non-autistic

Editor’s Note: This post was originally published in 2012 and has been updated with a new author bio as well as a new featured image. 

Larkin Taylor-Parker is a second-year law student at the University of Georgia. She is interested in disability rights, the experiences of young professionals from historically marginalized groups, and fixing internet culture. She is also an avid recreational tuba player.

Mix Applesauce with Medicine to Create Inclusive Classroom Communities

jars of homemade applesauce

By Alex Dunn

Inclusion is not a place, but rather a philosophy that all students deserve to experience successful academic and social participation side-by-side with peers. 

What does successful inclusion look like?  Recently Nicole Eredics on her Inclusive Class Blog asked this question and found this wonderful visual from The Parent Leadership Support Group of Georgia, which was posted on their Facebook page, as a response.

From our four year Smart Inclusion research project, I would like to propose some small changes to this great image in order to recognize that in order to create inclusive classroom communities, we need to acknowledge that no two students are alike and that changes need to be made to existing learning environments to reach and teach every student; “barriers to learning are not, in fact, inherent in the capacities of learners, but instead arise in learners’ interactions with inflexible educational materials and methods.  (CAST Teaching Every Student in the Digital Age: Universal Design for Learning, Preface p. iv).

For those like me in the trenches, in schools every day, it is important to ask the question: How can we make a difference to the students and educators we serve and really achieve inclusive classroom communities?  A recent Twitter exchange with Jeannette Van Houten (@jvanhoutensped) and Tim Villegas (@think_inclusive) made me reflect on what we tried to do in our schools at Upper Canada District School Board in Ontario Canada over the past four years.

Educators told us that in order to achieve inclusive classroom communities they, with their students, needed to become proficient across three continuums – inclusion, curriculum, and technology.  In a way, I equate the integration of all three continuums to applesauce and medicine.  Although the technology (e.g., iPads, SMART Technology, Nintendo, Laptops etc) and other classroom manipulatives (e.g., Lego, Wikki Stix etc)  have been the all-important applesauce, I think all those involved with Smart Inclusion research would agree the key to the success for both educators and students has been the way the applesauce of technology has been combined with the medicine of bringing research-based pedagogy (e.g., Universal Design for Learning (UDL), Differentiated Instruction (DI), Aided Language Stimulation, Student, Environments, Tasks, and Tools (SETT) and Participation Models) into practice.  In short, educators cast a UDL net attempting to catch all students but sometimes, despite our best efforts, some students fall through the net and sit on the outside of education looking in which is completely unacceptable.  Pat Mirenda and David Beukleman’s Participation Model (PM) (really Differentiated Instruction with a twist) has provided us a way of catching all students that fall through the net.  As Jeannette Van Houten suggests “failure is a way to move to success”.  The Activity Standards Inventory (ASI), from the PM does just that.  Here is a link to a case study of one of our Smart Inclusion students and how we applied the Participation Model to help identify barriers to participation and subsequent intervention, including the use of technology.

A special thank you to the staff, students and parents at UCDSB for giving their nights and weekends and for sharing their work and that of their children, so that children worldwide can experience the same successful academic and social participation.  This groundbreaking research we have undertaken has been replicated in other school Districts in Ontario and Alberta, Canada.  Many other Districts, educators, parents, and students, worldwide have joined us on our journey to ensure that ALL really means ALL and that we are truly welcoming everyone, all the time, everywhere” (Pat Mirenda).

Photo Credit: Andrew Seaman/Flickr

Alex DunnAs Speech-Language Pathologist at the Upper Canada District School Board and president of Inclusioneers, Alex Dunn has presented across the USA, Canada, Germany, England, Spain, exploring technology (SMART Technology, iDevices, Assistive Technology) and theory as part of Universal Design for Learning Toolkit to ensure ALL students, achieve the goal of meaningful educational, social participation.  Recently Alex Dunn was named SMART Exemplary Educator of the Year for Canada for 2012 and appointed as an Officer for Special Education Technology Special Interest Group for the International Society for Technology in Education (ISTE).  You can find her on Twitter @SmartInclusion or visit the Smart Inclusion Wikispaces Page

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