Social Media Gives Self-Advocates Voice

David Feit is a Facebook aficionado. The 39-year-old electronics firm assistant with Down syndrome has exactly 5,000 Facebook friends, and uses the social media platform like an open diary. The self-proclaimed “Funcle” (or Fun Uncle for those of you who aren’t in the know) first caught my attention by seeking me out as a friend, and then engaging me in conversation with each “Like.”

“Half of my Facebook friends I went to school with. Some are old friends, and went to school with my sister. Some friends live in my old neighborhood. I have a lot of parents with children with Down syndrome on Facebook” David described when we chatted via phone the other day.

I have about 10 teens or adults with Down syndrome that are my Facebook friends. I love seeking out self-advocates to get their perspective on Down syndrome and life in general. Only a few of those friends engage with social media in an truly independent way like David, and fewer still use it to advocate for themselves and others.

Read Related Post Here: Communication is Key to Self-Advocates’ Pursuit of Goals

“I think that David has learned a lot about the world from being able to navigate the web. He learns about people, places and things going on in the world. This is mostly the world of sports and movies, but he also reads about injustices in the world and it really upsets him and we talk about it,” explains his mother, Suzanne Feit. “David has had a lot of practice advocating too. He’s advocating for everyone in the world. There are no boundaries. He will advocate for himself, and everyone else who he thinks is being wronged.”

One of David’s recent post:

It’s obvious when you read David’s posts that they are authentic, and somehow he knows more about Facebook graphics than me. “I roll with technology changes. I’m nothing like my father, who cusses at technology,” laughs David over the phone. David’s mother started an assistive technology nonprofit when he was 4-years-old, but it was David who taught her how to Facebook. “My mother taught me and then I taught her on Facebook and texting. I’m the king of texting. I take the best picture of my nieces and nephews. I just know how to capture them. They’re my world,” David explains.

Let’s face it, Facebook and other social media platforms are here to stay. Facebook has led to the fall in power of tyrannical leaders in some countries, as well as a political groundswell in our own. It can provide a new world of independence and advocacy for people with disabilities.

Read Related Post Here: Self-Advocate Uses Fame to Spread Message of Inclusion

Especially individuals with Down syndrome, who can sometimes struggle with intelligibility. Self-advocate, John Franklin Stephens, used his Facebook account to share a testimony he gave to Congress pleading for increased funding of Down syndrome research. The thought-provoking video has been viewed millions of times, and is now spreading through the news media and social media in countries where Down syndrome is being effectively eliminated through prenatal testing. Read here.

But what about parents’ legitimate fears that social media may be misused or unsavory characters may take advantage of their child?

Advocate and parent of a teen with Down syndrome, Jawanda Mast, says those are fears all parents must face. “Our 17-year-old daughter, Rachel, wanted snap for a while and her dad helped her get that set up a few months ago. She does a lot of that on her own and has really enjoyed being able to connect to her friends. We watch her social media to be sure she is being responsible and others aren’t trying to take advantage of her. Facebook is not cool with the teenage crowd, but if she does want it we can help her with it,” Jawanda explains.

“What’s going to work on literacy more than being on the web and writing to people. I trust the universe to help and don’t live in fear. I do monitor his comments on Facebook when I see something that is inappropriate. I tell him that he must be appropriate and we work hard to help him understand that he is responsible for his actions and his words. Not much unlike the rest of the world right now, don’t you think?” David’s mom, Suzanne Feit says.

Read Related Post Here: Independence for People With Down Syndrome is Just a Click Away

My own 5-year-old son, Troy, is often better at navigating the iPad than I am. Although I limit his screen time, I realize that it’s that very same technology that will likely some day help him live independently like David. “I would encourage people with Down syndrome to have a Facebook, because you can communicate with friends and family about how blessed you feel to have them in your life,” David says.

Do you allow your child with Down syndrome to use social media or technology? How has it made them more independent or led to inclusion? How do you monitor their use of technology? I’d love to hear your thoughts below.

September 13, 2017September 12, 2017

Self-Advocate Uses Fame To Spread Message of Inclusion

You’ve probably seen this incredible World Down Syndrome Day PSA. I’ve yet to watch it without smiling and crying simultaneously.

Gorgeous actress and model, Olivia Wilde, spending time with family, working, dating, living an ordinary life. But the voice is not Olivia Wilde’s. And the life it describes is anything but ordinary.

20-year-old AnnaRose is the voice behind the 2016 World Down Syndrome Day PSA “How Do You See Me?”

She says the video perfectly reflects her life of inclusion: “I want people with Down syndrome to be heard and to be treated with respect like everybody else. I think that speaking up is the right way to advocate for people who have Down Syndrome like me.”

The ad quickly became a sensation in and out of the Down syndrome community, but AnnaRose says a more recent accomplishment is what really makes her proud.

“I just graduated from Rowan College in New Jersey, and I’m so excited and proud of myself. I did a lot of exciting things to achieve my goal of graduating.”

AnnaRose says the best part of college life was being included on campus. “I’m a DJ at the Pemberton Campus at RCBC and I have also worked at the bookstore at the RCBC Mount Laurel Campus,” she explains.

This incredible self-advocate didn’t stumble upon fame and inclusion at college by accident. AnnaRose says she and her family have worked hard from day one to make her a fully included member of her school and community.

“I have always been in inclusive classes, ever since I started school. My classmates have helped me with school projects, sharing notes, following along, and learning acceptable behavior. I also have had to work sometimes to get my teachers on board with MY educational goals. I had to show them that I want to learn. In 2014, I graduated from high school and got my diploma. I was a member of the National Honor Society and an active member of many clubs in my high school,” AnnaRose describes.

She’s also been included in sports teams throughout her childhood, and in 2015 she was invited as a VIP guest of the ticker tape parade after the USA Women’s National Soccer Team won the Women’s FIFA World Cup.

AnnaRose takes her role as self-advocate seriously.

I had the privilege of meeting her this past April, as we both advocated for the rights of individuals with Down syndrome on Capitol Hill. There, she spoke with Congressmen about issues that impact her.

“For all my life, in my experience, inclusion works. Studies prove that inclusion works for everyone. But, there is still a lot of work to be done,” she argues.

AnnaRose says she is not the exception to the rule. “Inclusion is for everyone,” she argues.

For those who want to follow her path of inclusion, AnnaRose has this advice:

“In high school, you have to take serious, inclusive classes. Academics comes first. You have to be prepared to work hard in college, and that starts in middle and high school, even elementary school…

You should also take classes that you are passionate about so that in college, you will know what you want to learn more about. I took TV Technology in high school, and then interned in that classroom in college for my major, Entertainment Technology: Video and Digital Media Production. You should also make friends who support your goals, and who you can support, too. I have friends on both sides: with and without Down syndrome. That is important.”

The recent college grad now plans to look for a summer job in filmmaking, radio, or television. She’ll further her education this fall. ” I’m going to Rider University to continue my degree in Filmmaking, TV and Radio,” AnnaRose explains.

And while her ultimate dream is to work on or behind the silver screen, that dream also includes something most of us take for granted.

“I dream of having a strong group of supportive friends, and of being treated with respect by everyone I meet and work with.”

Congratulations to the amazing AnnaRose! Inclusion Evolution and the entire Down Syndrome community applauds you! You’re an inspiration and we can’t wait to follow your journey of inclusion!

September 5, 2017September 6, 2017

How Having a Son with Down Syndrome Pushes Me to be “That Mom”

I’m becoming “that mom.” You know the one:

The one who honestly thinks her child would be an asset, rather than a liability to your typical kid’s classroom.

Who thinks her son doesn’t have to “keep up” to be included.

The one who cares when you say “retarded,” even when you argue that you “didn’t mean Troy.”

Who writes all those annoying political posts about how Medicaid cuts would impact Troy, and take disability rights back a generation.
The one who thinks inclusion for her son is the civil rights debate of our time.

Who shouts that separate is NEVER equal to anyone that will listen.

How dare she! The audacity of it all!

The evolution to becoming “that mom,” isn’t an easy one for me. I’ve had to adapt to my new environment. I used to be so easily swayed.

First, I was a journalist who always tried hard to be unbiased. Then, I was a teacher who ran my classroom like a well-oiled machine, not thinking much about the absence of any kids with disabilities in my school.

But what I now realize is if I don’t stand for Troy, who will?

Our culture has yet to embrace full inclusion of my son. Sure, there’s been good progress, but you know how I can tell we’re not there yet? I can tell when I take my twin son’s to school, and one can enter a regular kindergarten class no questions asked; while the other must fight to earn a spot in the same class.

Federal law protects my son from this culture of exclusion. IDEA says he deserves an individualized, free, and appropriate education in the least restrictive environment. Still, these laws are not enforced the same across our nation.

Federal courts have ruled “Inclusion is a right, not a special privilege for a select few” in Oberti v. Board of Education.

Still, my friends tell me how their kid is doing laundry and vacuuming in primary school, instead of learning to read next to their typical peers.

At the Buddy Walk on Washington with self-advocate, Kyle McKay

So, instead of just hoping my son learns next to his brother, I’m applying to the Special Education Advocate Training through the Council of Parent Attorneys and Advocates. I will be an expert in the laws that protect my son in school.

Not only do I post on Facebook about legislation that impacts my son, I attend the Buddy Walk on Washington to actually meet with my legislator and tell them my son’s story.

Instead of waiting until Troy turns 21-years-old to think about what job he might get, I’ve started a local communications workshop for adult self-advocates to learn about their successes and challenges in employment.

Obviously, you don’t have to go this far to be “that mom.” I’ve seen moms feared, misunderstood, and even pitied for a lot less.

I surprise even myself by my moxie.

But I’ve also gained a new clarity of my life’s ambition. Because if I don’t stand as an advocate for my son now, how will he ever know how to advocate for himself in the future.

If I don’t stand for something, I’ll fall for anything.

August 29, 2017August 29, 2017

Communication is Key to Self-Advocates’ Pursuit of Goals

This summer I started a “Self-Advocate Communications Workshop” in my local area, and I’ve been blown away by the progress of the teens and adults with Down syndrome.

Honestly, I didn’t have many expectations for the workshop. I just wanted our local self-advocates to better represent themselves and the organization that supports them (MVDSA).

But watching our group of self-advocates rehearse for their role at our 15th Annual Buddy Walk literally brought happy tears to my eyes. I know it sounds cheesy, but they are really starting to act like self-advocates by communicating their wants and needs to people outside their family.

Our mantra for the workshop is “I Can!”

Many of our self-advocates started the workshop apprehensive to speak in front of strangers, to look someone in the eye, and tell others who they are and what they stand for. The “I Can!” mantra helped them put into words their goals for the Buddy Walk and life in general.

In our last workshop before the Buddy Walk our Theater Educator, Stephanie Radford (heavy on the “RAD”), brought in strangers to test the self-advocates’ new communications skills.

They’ve been working on:

conversational skills
non-verbal communication skills like eye contact and body language
improv skills
speech skills

The self-advocates have warmed up to us over the last three months, but we wondered how they would perform in front of complete strangers. We set up a practice advocacy table with games and brochures, like they’ll have at the real Buddy Walk.

Practice with strangers to prep for the Buddy Walk

The first interaction was a bit forced, but as the strangers started asking the self-advocates questions about their life everyone started smiling and having a good time. The self-advocates used what they’ve learned about eye contact and reciprocal conversations to engage these strangers they’ve never met. I was impressed! They know that people may have a harder time understanding them, but still they advocated for themselves and got the job done.

I can’t wait to see how they do September 16th at our Buddy Walk!

They’ll be the ambassadors of the Miami Valley Down Syndrome Association; running our advocacy table and introducing national, state, and local politicians to Buddy Walk attendees.

Self-Advocates with our volunteer actors

August 28, 2017August 29, 2017

Serving Up Sportsmanship Through Inclusive Tennis

Tennis requires a fast response time, hand-eye coordination and a lot of stamina. The non-profit, Buddy Up Tennis, is serving up these skills to athletes with Down syndrome and creating a community of tennis lovers.

Serve it, smash it, win it, love it!

The 90-minute weekly session I watched locally would have anyone’s heart rate up. More than 20 athletes with Down syndrome teamed up with “buddies” who also enjoy the sport. There was a half an hour of high-intensity calisthenics, another half hour of basic skill building, and then time to play the game.

“Buddy Up Tennis is my favorite MVDSA (Miami Valley Down Syndrome Association) activity. My buddy, Jeff, is so funny and I accidentally hit him with the tennis ball a couple times this Saturday but he just laughed,” explains athlete Walter May. Buddy Up Tennis even led to a job for May at the local tennis club.

The non-profit was started in 2008, when an Ohio mom, Beth Gibson, was playing tennis with her typical child and noticed her 3-year-old son with Down syndrome loved watching them play. “Will was always fascinated with tennis. Staff members at our tennis club soon volunteered to teach tennis to Will, and researched techniques for teaching children with Down syndrome in order to do so. As a result of this research, the need was identified for an organized tennis and fitness program for individuals with Down syndrome,” Gibson explains.

No experience is required and all individuals with Down syndrome 5-years-old and up are welcome to play. The program teaches the following skills:

specialized training in the fundamentals of tennis
improvement in muscle tone, core strength, agility, coordination skills
opportunities to expand social and emotional skills through sportsmanship and team building
connection to the Down syndrome community in your area

Buddy volunteers are at the heart of the Buddy Up Tennis program.

The buddies include a combination of tennis professionals and typical peers who love the game. Anna Jones, head coach for Dayton’s Buddy Up Tennis says the local group has a strong following. “It’s a great opportunity for everyone involved,” Jones says.

My Dad is visiting from California, and is an old tennis pro from way back. He was chopping at the bit to get out their and play. By the end, he’d made fast, new friends with 14-year-old Aljoon, who happens to rock an extra chromosome. “What an awesome program! I can’t wait for Troy to be old enough to play. Tennis is a great sport and these kids are gaining life-long skills they can use to stay active,” my dad happily describes.

In 2016, the United States Tennis Association named Buddy Up Tennis the “Adaptive Tennis Program of the Year.” Today there are 17 locations throughout the nation from Ohio to Texas.

Tag: adult self-advocates