Tomorrow Is Too Long to Wait for Inclusion

Inclusive Games, Toys, and Activities for Blind Children [Infographic]

Inclusive Playtime for All Children

Blind children are vulnerable to having their play restricted, but in many ways, they need it more than sighted children. It helps improve their curiosity and independence, as well as contributing to personality development.

In this infographic, we look at some ideas for play with blind children. It includes some handy tips on how to have inclusive playtime with children of all abilities. We also look at how you can adapt toys to be more user-friendly for a visually impaired child.

There are creative ways to get your kids involved in arts and crafts too and fun activities that will help them learn how to play and develop their sensory skills.

By Kerry Berry

Playtime with Blind children and visually impaired children
Playtime with Blind and visually impaired children by Wooden Toy Shop

5 Things Children Totally Understand About Disability That Most Adults Do Not

By Emily Beitiks

If my kids (age 4 and nearly 2) and I woke up tomorrow morning and found a dragon in our living room, my son’s top concern would be “What should we name it?” and my daughter would probably try to hug it. I haven’t yet taught them that if you see a dragon, proceed with caution, as we believe them to be fictional and quite likely dangerous.

Every single thing we know today as grown-ups, we had to learn at some point in our development.

But there are some things my kids intuitively grasp without my help. To my surprise, nearly everyone I meet below the age of 4 just rolls with it when it comes to disability. Ableism hasn’t taken hold yet. Here are five things I’ve seen young children totally understand about disability that unfortunately, most adults struggle with (And feel free to share more examples in the comment section below!):

1) There’s nothing shameful about having your butt wiped.

We recently had one of my son’s friends over to our house, and my son was trying his hardest to impress her. He showed her his extensive dinosaur collection and even let her hold all the items in his treasure chest, the highest honor. Without the slightest ounce of modesty, he interrupted their play date to loudly announce, “I have to poop!” He then ran to the toilet and carried on a conversation with her while taking care of it. Shortly after, she too needed to poop and didn’t think twice about asking me to come in when she was done, already waiting with her butt in the air.

People with disabilities and their personal care assistants know this lesson. Dependence in the bathroom becomes mundane, and taboos surrounding bodily functions go out the door. When nondisabled people think about disability, needing to rely on someone else’s help for transferring to a toilet or wiping often instills fear and disgust: if I had to live like that, I’d kill myself, they say, forgetting that it was once commonplace for all of us.

2) It’s okay to ask for help when you need it, and at other times, to turn down help.

My daughter getting help.

My kids can’t tie their shoes, read a book, (and we’ve already covered the whole butt wiping thing), so they call on others for help constantly. However, when they don’t need help, they really let me know it. Typically, it involves a shout of “I CAN DO IT MYSELF!!!,” deeply insulted that I would try to assist them with something that they had now mastered.

People with disabilities might ask for help at times, and at other moments prefer to do something without help, knowing that help can be counterproductive (e.g. you should never push a wheelchair rider’s chair or open a door for someone unless you have been asked to). Children get that it’s okay to be complicated when it comes to what your needs are.

3) We should search for commonalities before differences.

Here’s a recent conversation I had with my son (pictured right), looking at a photo of the Geico gecko (pictured left):

Carver: Hey, he looks like me!

Me: I don’t see that. Like at all.

Carver: Really? Huh.

I didn’t press further. Apparently, the lines between his body and the gecko’s weren’t as different in his mind as they were in mine.

When you think about it, several children’s movies (ET, Lilo and Stitch, The Iron Giant) show kids befriending and harboring aliens that everyone else wants to cage up or eliminate…while fictional, the impulse of children to embrace difference or even celebrate it as something cool, rather than stigmatizing, is grounded in reality. As my son’s mysterious connection to the Geico gecko, kids see commonality before difference, and my guess is it’s because they simply haven’t lived long enough to learn a cemented version of what “normal” is.

4) Devices are really useful and cool!

An assistive device!

Too often adults think of anyone who uses a wheelchair as “wheelchair bound,” suggesting the device is a tool of oppression rather than one of mobility. Children do not, however, share this perspective. My son recently said to me, “I wish I had a wheelchair, don’t you mom?” (in part because he knows he’s not allowed to play on the elevator in our house, that’s only for when a wheelchair rider visits).

And why would kids think negatively about assistive technology devices? They too rely heavily upon them, from their strollers to the stools in front of the sink to their own potty chairs and “special” scissors. Next time you see a parent toting a baby on their back, ask them how they are coping with having a “bjorn-bound” member of their family!

5) The built environment determines what you can and can’t do.

I bet this helped sell a lot of toys…

Ask any kid who grew up in the 80s anywhere near the Stonestown Galleria in San Francisco, and they’ll likely remember the joy of walking through the small door at the Imaginarium toy store. In a world built for adults, there was something magical about encountering that door, knowing that it was meant for you. I’ve seen my son react similarly when we’ve visited children’s museums that have lowered sinks and toilets at his height. And when kids encounter the converse, they’re similarly frustrated. Why is that cool toy (that I’ve taken away from my son because he hit his sister with it) out of reach on the top shelf of the bookshelf?! Kids are constantly learning what people with disabilities experience every day: what you can or can’t do and even your sense of belonging vary with the surrounding environment.

I wish I could say that what I’m taking away from these observations is optimism that the new generation of children is growing up with a keen understanding of disability. Alas, my hunch is that instead, it reminds us that we are gradually learning to make different assumptions about disability (negative and stigmatizing) that take over.

As children grow up, they often become fixated on difference, and don’t hesitate to point it out, whether it’s “Your teeth are yellow!”, “That boy is wearing a dress!”, or “You don’t have an arm!” When they do this in front of their parents, it is often quickly shut down with “Don’t stare!” or “That’s rude!” teaching them that the difference is shameful. And when our door for acceptance of difference slams shut, children can be especially cruel to other children, resulting in social exclusion and bullying.

Ableism is a learned process. However, that does give us hope that we can teach different lessons that allow us to reconnect with the lessons we grasped more easily in our youth. I’m working on that with my kids every day (so that warning about dragons being fictional and potentially dangerous might have to be on the back burner).

Source: 5 Things Adults Unlearn about Disability || Disability Remix Blog

Photo Credit: mel issa/Flickr

Thriving in an Inclusive Fitness Setting

inclusive fitness; barbells lined up against a gym wall

Hello again, after a long absence. Too long! I went missing around here after July 9th. A luxury the site can afford thanks to the great posts from Tim Villegas and various guest bloggers. While away I enjoyed the different offerings provided by an inclusive fitness setting. In the process I achieved new milestones, establishing a new personal best in 5ks (3.1 miles). Plus I completed my goal to walk a half marathon (13.1 miles)!

Zachary Fenell after crossing the finish line to complete his half marathon goal.

Me at the Towpath Marathon Half Marathon finish line October 9th, 2016.

Along the way, I discovered a passion for encouraging others with disabilities to live active lifestyles. Activities like joining a team, going to the gym, or participating in organized athletic events. Sitting down with two others living active lives despite cerebral palsy (CP) remained amongst the initiatives I pursued. Daryl Perry a personal trainer with cerebral palsy. Also Brandon Ramey, a former college football player for Saint Thomas More. I recorded our near 40-minute conversation about fitness. Then I compiled highlights into a four-part Youtube series dubbed “Cerebral Palsy Fitness Round Table.”

Although our discussion concentrates on CP, you will find certain ideas mentioned universal to disabilities in general. Insights that could help you or your loved one thrive in an inclusive fitness setting. A valuable asset as Daryl Perry emphasizes athletics’ importance in the series’ second video. He explains “The other thing about athletics is it teaches you discipline and how to be on a team, this and that. Skills you’re going to need throughout life.”

Perspective

Ironically a barrier to an inclusive fitness setting comes internally. The person with a disability may feel self-conscious, which breeds anxieties. Suddenly you start second guessing. “Do I want to try out for this team?” “Is the gym the place for me?” If you notice such thoughts creeping into your mind, consider these words from Daryl Perry.

“You think everybody is constantly looking at you. Honestly, initially, they probably are. But it’s kind of like we tell our kids which is don’t worry about what everybody else thinks of you because chances are they are more worried about how everybody is thinking about them. So it’s the same thing with this.”

Meanwhile, Brandon Ramey supplied a reminder what an inclusive setting looks like differs based on the individual. Often the mainstream media frames an inclusive sports story in an inspirational context. A treatment Ramey received in high school by The Cincinnati Enquirer. He recalled the article titled “An Inspiration at Oak Hills,” saying the following.

“I wasn’t just on the team just to fill out a jersey and be, ‘Aw yeah, that’s great.’ I earned the right to play. I won the right to tackle somebody else. That’s not an inspiration. That’s just me wanting to do what I wanted to do and being able to.”

Ramey went on to express gratitude for possessing those abilities. For others, an inclusive setting might mean fulfilling another role. For example, team manager. Said roles still teach useful social skills. Simultaneously they foster the belonging only a team can grant. Evaluating a person’s abilities remains the smartest approach to determine the best role for him or her. After all, you want the position to challenge personal growth.

Leveling Up

Maintaining a challenging aspect preserves arguably the most rewarding part of fitness and athletic pursuits, building character. Maybe anxiety runs through you because starting out you can’t lift heavy weights. Or, you need to hold onto a wall to keep your balance during yoga. Brandon Ramey shared a reassuring truth. “We each start out just really as our weakest self. We all start at a different person. We all start out at a different starting point.”

Individuals around you who seem to move with ease worked to get there. Persistence segues to improvement. A point Ramey identified in his continuing comments. “You might drop that barbell on your chest, but you know what? If you keep going and going and going, eventually you’ll get that up. And you know what? That is one of the best feelings in the world. Something physically you were failing at time and time again, but you work at it, and you achieve.”

Alongside the journey to improvement, lines blur. This occurs when aches and pains clash with a desire to expand your comfort zone. Deciding to stop or push forward leads to indecisiveness. Wisdom from Daryl Perry should assist you in making a sound decision. “The folks I work with what I always say is you want to push yourself. But the number one goal is you want to be able to come back and do this tomorrow and the next day after that.

Better Together

Perhaps nothing above appeased your concerns yet; perhaps Perry can console you. He admits “The first time you walk in there (the gym) it is pretty awkward, but you just do your thing.” His observations ought to uplift you.

“What I’ve found with exercise is you just kind of show up and do the best you can. The people that are the regulars there they kind of see that. They come around you, and everybody comes together and are very supportive.”

Within Daryl Perry’s closing remarks he stressed the power of people. “If you are looking at getting into this, one is it is never too late. So if you’re in your 30s, 40s, 50s, it’s just finding your people.” He suggested “Start a Facebook page. Start a blog. Somebody out there has the same interests.”

Daryl Perry and Brandon Ramey join Zachary Fenell for a discussion on inclusive fitness.

Get in touch with Brandon, Daryl, and/or myself on Twitter.

To close out, Brandon Ramey invited anyone with questions to contact him on Twitter (@Brandon_Ramey). Anyone interested in learning more about Daryl Perry’s personal training services can visit http://yourlevelfitness.com. Whether you contact Ramey and Perry, at least remember the key elements to thrive in an inclusive fitness setting.

Focus on ability to determine how inclusion will look best for you or your loved one. Choose a challenging role which facilitates personal growth. Finally, seek supportive people with similar interests.

For more watch my entire “Cerebral Palsy Fitness Round Table” video series. Due to audio issues with the recorded video, you will want to turn up the volume on the videos and your device. Or, turn on the closed captions.

Photo Credit: Ken Conley/Flickr

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

Blind Actor Performs in a Southern California Production of “Annie”

Young, Blind Actor Performs in a Local Production of "Annie"

A young actor is getting ready to perform in a local production of the play “Annie” next month, and there’s one thing that distinguishes this talented man from others sharing the stage with him — he’s blind.

Young, Blind Actor Performs in a Local Production of “Annie”

Mason Fessenden, a 16-year-old actor is performing for the first time with actors who can see. The video below is the local Southern California news coverage from ABC 7 Eyewitness News.

Mason Fessenden is an actor and sometimes what people don’t notice is that he’s blind.

“He was born three months early. There were times people told that he would never walk, he would never talk, he would never be able to read braille,” explained his mother, Martha Fessenden.

He’s proved his doctors wrong and although he can’t see, the 16-year-old can sing, act and play the piano.

“He’s great on stage and he sings really well,” said co-star Tessa Barkley. “He just lights up the room.”

This will be Mason’s first time sharing the stage with actors who can see, but his voice coach said she has no doubt in his ability and is even pushing him to dance.

Martha, one proud mother, said she’s confident the world hasn’t seen anything yet. She expects Mason to continue wowing audiences into the future.

“He never sits in a corner and complains about his blindness and…couldn’t ask for anything more,” Martha added as she wiped away tears.

First of all, we want to say that this is a fantastic opportunity for Mason and we wish him the best of luck with his acting and singing. Hopefully, this is one more step in the right direction for disabled actors to be represented on television, film and stage productions.

Second, if you are in the Southern California area, you can watch Mason perform at the International Full Gospel Fellowship of Los Angeles church in Monrovia. He will play Bert Healey in “Annie” from Dec. 8-11 (2016). To purchase tickets you can go to CenterStageInc.com.

Do you think that there should be more actors and actresses with disabilities included in stage, television, and film performances? Tell us what you think in the comment section below!

Source: Young, blind actor breaking barriers in Southern California | abc7.com

My Own Apartment Building

EdEd was about 35 years old when he began telling people he wanted an “apartment building.” People at Ed’s support agency, Katahdin Friends, Inc. (KFI), had been TASH members for a number of years and were inspired by leaders in supported living to rethink how and where people with developmental disabilities could live. As a result, many of Ed’s friends were moving out of foster care homes and into their own apartments with support from KFI. Ed wanted this same opportunity, but apparently he wanted an entire building!

Ed had lived with his family until age 7 when he was sent to live at Pineland Training Center, Maine’s former institution for people with intellectual disabilities. As a young adult, Ed was transitioned out of Pineland Center to a variety of foster homes, eventually ending up in Lincoln, Maine, where he lived for 17 years. Ed was always described as having “aggressive behaviors.”

Although Ed continued to see friends move into places of their own, his family resisted the change. Ed’s foster home certainly did not support his choice, and he lived under the control of his foster providers. When Ed began working at the local McDonald’s, which provided job supports, it was the beginning of new expectations!

Ed’s parents never thought he would be able to hold a competitive job — but he had, and they were so proud. They began to view Ed in a different light. If he could do this, then maybe he could do other things….

In fall 1997, through Ed’s persistence and KFI’s gentle advocacy, his family finally agreed to him renting a place with a roommate—better, but not ideal. Ed and his new support team located a roommate to share the costs, and Ed moved into his own place on October 13, 1997.

Once in his own home, Ed revealed the effect of his restricted former foster life by standing at his bedroom door until someone gave him “permission” to come into the rest of the house. Despite coaching from support staff, it took months for Ed to realize that this was his home and that he could go wherever he wanted. When he eventually learned how to make his own coffee, he immediately discovered that it tasted far better than the watered-down version he was used to. Ed’s support team also introduced him to lactose free milk on his cereal instead of water. What a difference in taste! Small things maybe, but life was changing.

Ed delighted in showing visitors every part of his home, highlighting his appliances, yard, cellar and other areas of interest. It was the first time that this man in his 40s had possessed anything and controlled his life.

Ed continued to demonstrate his desire to live alone—sometimes using powerful actions to express himself. Following TASH values, KFI rearranged its resources to support Ed’s desire to move into his own apartment without a roommate.

Because he had achieved success living on his own, holding a job and being part of the community, Ed was invited as part of a team presenting the art of the possible at a TASH National Conference in Seattle, Wash. He shared a hotel room, sampled exotic cuisines, rode an escalator for the first time and “told his story” – including what it was like to live in a state institution.

The contrast in Ed’s life is remarkable. For 17 years, he was institutionalized, then lived under foster care direction. Once in his own apartment, Ed became a valued employee and began participating in his community as a worker, neighbor and friend. Ed remains the same man he has always been; it is we who have changed – society, attitudes and the realization of the art of the possible. The same relative amount of money that kept Ed in an institution now supports him to lead a regular community life.

Ed’s life continues to blossom. He became a homeowner on December 20, 2005. He loves his new house on Taylor Street in Lincoln and enjoys being a host when people come to visit. He has been employed by McDonald’s for 13 years. He volunteers at a local food cupboard, attends music jams, plays bingo and has been attending the same church for over 18 years. He works out at the YMCA every week. And he has recently developed a new connection—the gentleman who mows his lawn regularly stops in to have coffee or a soda.

If you were to ask Ed about his life today, he would say, “I am happy, I am the boss, and it is my right.”

This article originally appeared in a document published by TASH in 2008 called When Everyone Is Included. For more information on the important work TASH does please visit their website and follow them on Twitter. This is the third article in a series. The first article can be found here, and the second can be found here.

The Incluseum: How Can We Make Museums More Inclusive?

incluseum; a long exhibit floor with floor to ceiling painting on either side, a smattering of people viewing the art

We wish to state from the onset of our post that we’re not specialists in learning and developmental disabilities, but rather are advocates for museums becoming more inclusive of diverse groups and individuals. Because the discussions of access and inclusion can be sensitive, we also wish to state that we believe access and inclusion go together; true inclusion can not happen without access.

Recently, an increasing number of museums have been responding to the reality of learning and developmental disabilities, including Autism Spectrum Disorders (ASD) in several ways.

Programming for Children with Disabilities

Based on the results of a simple internet search (“museums and autism”), the most common way for museums to engage with children with ASD appears to be through “separate,” disability-specific, programs. For example, the Metropolitan Museum of Art offers special multi-sensory workshops (Discoveries) for children “with a range of abilities and learning styles together with family and friends.” These workshops include “tactile opportunities and art-making activities.”

Other museums offer focused, subject-specific programs. For example, the New York Transit Museum offers an after-school program called Subway Sleuth specifically for kids with a passion for trains and transit. The goal of this 10 week program is to use participants’ passion for trains to help them navigate social experiences with peers.

However, some museums’ organize programs suitable for both kids with or without ASD. For example, the Club Discovery at the Creative Discovery Museum in Chattanooga, TN is an after-school programs that offers multi-sensory educational experiences for children with and without learning disabilities.

Inclusive Institutions

Other museums take a different approach to engaging with children with ASD, building inclusion into their institutions’ identity. In these cases, access is usually carried out beyond a special program and incorporated into most aspects of the institution. For instance, a museum we found particularly exemplary in this regard is the Children’s Museum of Chicago that believes “an accessible and inclusive museum must address each visitor’s experience – making the museum’s facilities, offices, exhibits, services, programs, and staff welcoming to all.” Through its Accessibility and Inclusion agenda, the museum offers families and caregivers various options to accommodate the needs of their children. For example, the museum provides:

  • Kits developed with The Autism Program of Illinois to help visitors smoothly navigate the museum.
  • Storybooks specially designed to prepare children with developmental disabilities for their museum visit
  • Maps that indicate “noisy areas,” helpful for visitors that need to avoid certain auditory stimulation
  • Sound reducing headphones

In addition to these components that facilitate access, the museum’s staff participates in ongoing training “to better assist visitors with disabilities and their families.”

Conclusion

While we recognize the potential value of ASD-specific programs, we believe true inclusion happens when a museum recognizes and responds to the barriers that keep many individuals and groups in their communities from accessing its resources on a regular basis (i.e., beyond “special” programs) and in a meaningful fashion (i.e., the content accessed is both relevant and suitable to the group or individual). We worry that disability-specific programs keep children with learning and developmental disabilities marginalized. We also recognize the important need to evaluate the impact and success of museums’ access and inclusion strategies. Do programs meet the participants’ needs? Are the various support materials (e.g., maps, storybooks, etc.) helpful? How do families experience the museum space and their interaction with museum staff?

In many cases, museum professionals lack the expertise needed to create flexible programs and spaces suited to the needs of children with learning and developmental disabilities. However, these professionals have the ability to learn, and we’re certain that most would be open to hearing your suggestions for greater access and inclusion. For example, we recently interviewed the Seattle EMP Museum’s new Manager of Youth Programs+Community Outreach who partnered with a local university’s Music Therapy Department to learn how to accommodate children with ASD. This partnership led to a two-week camp and the training of museum staff in best practices for creating a more comfortable and welcoming space for ASD youth.

We firmly believe that partnerships between museums and organizations/professionals with expertise in learning and developmental disabilities are key to inclusion. Such partnerships could, for example, lead to the training of museum staff and docents and the adaptation of existing museum materials to fit the needs of a more diverse range of people.

As we stated at the beginning of this post, access is essential to inclusion. An invitation to attend the museum and engage through a program, event or a space that is meant to serve a previously marginalized group or community is signal of welcome and acknowledgement. Many museums are in pursuit of inclusion. Sharing their successes and strategies, along with creating needed partnerships, will insure that more museums become aware of and take part in this collective progress. Check out our blog in the near future, as we’ll be conducting interviews with community groups serving children with ASD and museum professionals who are working with children with ASD.

In your opinion, what should museums know about youth and children with ASD?
What resources, tools, or organizations should they be aware of? What has been your experience with museums?

Aletheia Wittman and Rose Paquet Kinsley run a project and blog, The Incluseum, with the mission to encourage social inclusion in museums. You can contact them at incluseum@gmail.com.

 

Part Of Your World

By Dusty Dutton

My favorite song from “The Little Mermaid” is “I like to be where the people are… I want to be part of your world.”

My name is Dusty Dutton. I am 32 and have Down syndrome, which means I need help doing some things. I am legally blind, which means I need thick glasses. I also have diabetes, which means I have to do blood tests, take shots and watch what I eat to stay healthy. And I have a great life.

I love going out to dinner and movies, concerts, and plays. I volunteer at the Ross Valley Players every month, and I have made lots of friends there. I also love to travel.

I live in a house in Terra Linda, Calif., with my housemate Angela and her daughter Lexie, who is 6. Angela works at Casa Allegra Community Services, an organization that provides me with supported living services. Together, we have fun times. I like to do puppet shows at Lexie’s birthday parties.

I have always loved puppets. I remember doing shows in first grade and for my neighbors on the 4th of July. Now I am a professional puppeteer. At the College of Marin, I took many classes, but one of my favorites was a children’s theater class where we performed a Christmas play for children using puppets. I also took a class on how to start your own business. In 2006, I started a microenterprise called Dusty’s Puppets.

I have more than 20 different shows I perform at Head Start, the YMCA daycare, birthday parties, farmers’ markets, daycare centers and preschools and special events. My little fans are ages 1 to 4. I sell puppets on my Web site (www.dustyspuppets.com) and at fairs and festivals. I also make presentations about my life and starting my own business.

I have a great team that helps me. First, I have my circle of support, and we think about my business and my future. Then, there are people who work for Casa Allegra Community Services, like my housemate Angela who is also my business manager and Monica who drives me and helps me at my shows. Renee is my banker. Kelly is my bookkeeper. Dusty’s Puppets pays her to help me with my computer and with the money my business earns.

I really like my life. I like making money and having fun doing the things I really like to do.

Reflections from Dusty’s Parents (Donna and Dale Dutton): 

Dusty’s successes in life are the result of an inclusive education and being a full participating member of our community. Although the law proclaimed that all children should be educated in the “least restrictive environment,” inclusion was certainly not the norm when Dusty was born in 1975. In fact, the term inclusion wasn’t even used. Early on, we met forward-looking educators, advocates, and friends, namely California chapter of TASH (Cal-TASH) pioneers, who helped us move in the right direction in those early years. They educated us as parents and equipped us to be strong advocates for our daughter.

Of course, we were quick to notice that Dusty learned more, was more involved with other kids and was much happier while in inclusive environments. We especially remember when Dusty was invited to the prom as a freshman, and the homecoming queen, who was a neighbor, came over and told Dusty all about going to the prom. It was so cool.

I also remember the music appreciation teacher who just “got it.” He modified his materials and tests for Dusty in such a clever way that she was involved – at some level – in the same work as everyone else. To this day, Dusty claims Mozart as her favorite composer.

The most important “event” that reflected TASH’s influence occurred during Dusty’s school years. The event was her first person-centered planning meeting at age 16. Longtime friends and supporters were there, and the meeting lit the way for Dusty to become a “real” adult with a mission in life. She still talks about it.

Today, Dusty is a strong self-advocate. She sits on the Board of CalTASH and eagerly awaits each meeting and conference. She has presented at several conferences and is a recipient of the Cal- TASH “Outstanding Young Person” Award. Dusty’s achievements are evidence that TASH’s work can empower them to live full lives and follow their dreams.

This article originally appeared in a document published by TASH in 2008 called When Everyone Is Included. For more information on the important work TASH does please visit their website and follow them on Twitter. This is the second article in a series. The first article can be found here.

All We Needed to Know

By Leslie Lederer

Like most parents, we did not expect to have a child with a disability. Our firstborn son Danny seemed fine at birth. However, we soon noticed he wasn’t achieving the developmental milestones at a typical pace. At age six months, Danny was diagnosed with Infantile Spasms. We knew the news was not good when Danny’s pediatrician began crying as he delivered the diagnosis. Neither one of us had ever heard of Infantile Spasms. One of our first questions was how the diagnosis would affect Danny’s education. Little did we know that Danny would have significant intellectual and developmental disabilities.

Armed with a medical diagnosis, we began trying to fix Danny through medication and therapy. Fortunately, one of the medications stopped Danny’s seizures; it also resulted in the loss of most of the motor skills Danny possessed at the time. We continued to follow the advice of doctors and therapists, and Danny attended an early intervention program with other kids who had complex disabilities. Over time, we noticed that Danny was more interactive around other kids. This became even clearer when he attended a preschool with kids who had less complicated disabilities. One day, another mother said that her son considered Danny his best friend. What an eye opener—we had never thought of Danny having friends!

When Danny was ready for kindergarten, the school wanted to place him in “the severe and profound classroom.” We insisted he enroll in a class comprised of kids with disabilities, as well as many different abilities. About that time, I started working at New Mexico Protection & Advocacy and read a magazine from TASH, which highlighted how students with severe disabilities like Danny’s were being integrated into schools. Wanting to learn more, I asked to attend the annual TASH conference and learned how Danny could be included in schools and develop friendships with other kids in regular classrooms. I started educating school staff about what I had learned. At one of the following TASH conferences, I learned a process we could use to transition Danny to a regular third-grade classroom.

During that time, TASH was the only place that provided us with information about people with “profound” disabilities. For example, we discovered the book Individuals with Profound Disabilities, which was very helpful in educating our family and others about what Danny could do. Meeting other parents provided an outlet for information exchange and support—learning what to do for birthday was as important as all the school information.

As a result of our connection to TASH, Danny moved back to his neighborhood school in fourth grade over the loud objections of the principal. However, we knew the law said Danny had the right, and people in the district and our neighborhood supported us. He was able to finish elementary school with his sister, cousin, and friends—old and new.

Danny continued to middle school, and then we moved to Kentucky where he was included in high school. He went to proms, was on the homecoming court and the newspaper staff, and graduated with his class in 2002. The principal was welcoming, and many of the regular education teachers, his special education teacher and support staff from Jefferson County Public Schools were great at figuring out how he could work on his goals and participate in the general curriculum.

As Danny’s school journey came to an end, we began to reflect on what his schooling prepared him to do. From the beginning, he had been part of the school and larger community. He made friends, got invited to parties, played Little League ball with the help of classmates and participated in plays. Doing such ordinary things helped our family live a more regular life.

The next step was for Danny to transition to the community, including college. Using many of the strategies we learned at TASH, Danny did volunteer work and spent time in class and working on a college campus.

What about Danny’s goals? Danny has never learned to hold his head up, reach and grasp, feed himself or use a switch consistently despite the best efforts of teachers, aides, and therapists. What he has learned is to be part of the community. He can socialize and go anyplace. He has traveled to Florida, Jamaica, and Colorado. He is finally staying awake most of the day. He also has been a great teacher about including people with disabilities and has helped us all to use our creativity to make that happen. We realized early on that we were raising a future community member and to the best of all of our abilities and his, we have.

This article originally appeared in a document published by TASH in 2008 called When Everyone Is Included. For more information on the important work TASH does please visit their website and follow them on Twitter. This is the first article in a series.

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