Category: Advocacy

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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.

“Funcle,” David Feit with his nephew

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.

 

 

 

 

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What I Should Have Asked When My Son was Born with Down Syndrome

We had a lot of questions when Troy was born. 

Troy on the right, with his typical twin and Trenton

Why was this happening to us?

What health problems will he have?

Would he be high functioning?

Will Troy ever play with his typical twin brother?

Would we ever be happy again?

All of these questions focused on how Down syndrome would negatively impact our lives. Most of them revealed my husband, Trenton, and I’s utter ignorance when it came to Troy’s diagnosis. Some of our doctors and a quick Google search didn’t help matters. They seem to perpetuate only the pathology of Down syndrome; completely missing the beautiful life and possibilities that I held in my arms.

Of course hindsight is 20/20 and the reality is, just like parenting any child, you never know how your life will change until you walk down that path. So, if I could go back to that sad, scared mama almost five years ago I’d whisper one question into her ear:

How could Troy transform our family for the better? 

It’s not a question that doctors or Google could ever answer. It’s not a question that even came to mind in the midst of the overwhelming grief of what should have been. It wasn’t until I could let go of the should’ve/could’ve beens, that I realized how beautifully made my son is and how Down syndrome can open unexpected doors for myself and my family.

Acceptance of Down syndrome became our silver lining. 

Ironically, we didn’t accept Down syndrome that easily. We wrestled with the idea of it constantly those first few months of Troy’s life. It wasn’t until we accepted our son, that we accepted Down syndrome. You may have heard the sayings “my son is not Down syndrome” or “when you’ve met one person with Down syndrome, you’ve met ONE person with Down syndrome.”

These sayings are at once completely true and false. It wasn’t until Troy’s personality revealed it self (that first smile, the way he looked around for his brother whenever he wasn’t near, later when he woke up early every morning just like his Daddy, or loved to bust a move like his Mama), that we realized we would be happy again. Troy is unique and ours. Down syndrome doesn’t define him, but Down syndrome has found a place in our heart and has emboldened us to live better.

Read a Related Post Here: How Having a Son with Down Syndrome Pushes Me to be “That Mom”

Our family has become champions of Troy and all people who are different or vulnerable to misunderstanding. My husband had just graduated from Medical school when Troy was born. All he saw when he looked at Troy then was health problems related to Down syndrome. Now, he sees someone who loves life in spite of all that. This has changed the way he doctors, and sees his patients. It’s made him more compassionate and caring.

Hunter and Troy, almost 5-years-old

I’ve fully embraced my role as lead advocate in our household. I created this blog because of Troy, and will now train as a special education advocate to help other families. Although each of our loved ones with Down syndrome are unique and different, there are issues that bind our community together. We must stand together to ensure our loved ones get the support they need to be included in every aspect of society, whether that be school, employment, or our health care system. Five years ago, I couldn’t imagine myself presenting in front of my state legislature about a bill that I advocated for, but this fall I will do just that.

Read a Related Post Here: 5 Ways You Know You’ve Become Your Child’s Best Advocate

Even Troy’s twin brother already has a sense of advocacy. Hunter gives me daily reports about what Troy did in school, and is quick to tell us what Troy is saying when we can’t decipher his sometimes jumbled words. They say siblings of individuals with Down syndrome often lead lives of service and honor, and I can see that already in Hunter’s actions.

Troy leads by example. He’s always polite and congenial. When Troy walks into a room, everyone takes notice. He’s loud and boisterous. He wants to be heard, and he will. As will we!

I don’t think much about how life could have been with two typical boys, but when I do I realize we may not have been as close, strong, and empathetic as we are now.

How has Troy transformed our family? In countless, magical ways…that’s how! 

 

 

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Advocates Urge Congress to Increase Funding for Down Syndrome Research

We’ve learned a lot about Down syndrome since it was first identified 150 years ago, but there’s still a lot we don’t know. Now medical experts and advocates are urging Congress to properly fund research to better the lives of people with Down syndrome.

Self-advocate, national speaker and actor John Franklin Stephens urged the House Appropriations Committee on Wednesday to increase funding for Down syndrome research:

“I don’t feel like I should have to justify my existence, but to those that question the value of people with Down syndrome I would make three points. First, we are a medical gift to society. A blue print for medical research into cancer, Alzheimers, and immune system disorders. Second, a Harvard study found that people with Down syndrome and their families are happier than the larger society. Surely happiness is worth something. Thirdly, we are the canary in the eugenics coal mine. We are giving the world the chance to think about the ethics of choosing which humans get a chance at life,” Stephen’s proclaimed. 

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

If you haven’t had a chance to hear his entire testimony, it’s worth the 8 minutes! Fellow advocates in attendance told me his speech was extremely moving and brought most in the committee room to tears.

According to Global Down Syndrome Foundation CEO and President, Michelle Sie Whitten, “there’s a significant disparity in Down syndrome research funding compared to other less common disorders.” The National Institutes of Health (NIH) decreased funding for Down Syndrome from $29 million to $14 million from 2001 to 2009. Whitten says this decline happened while funding to the NIH actually increased.

DS-Connect: What You Can Do Today to Help with Down Syndrome Research

Self-Advocates like John Franklin Stephens and even my 5-year-old son, Troy, stand ready to participate in research that will improve the lives of people with Down syndrome and all of humanity. A simple way they’ve done this is through DS-Connect.

It literally took me 5 minutes to complete the online NIH health registry with Troy’s information. Families can use the registry to connect with researchers medical providers, express interest in participating in clinical studies, take confidential health surveys that researchers can use to better understand the health of people with Down syndrome. Click here to join DS-Connect registry.

Another great opportunity to get involved is the Human Trisomy Project through the Linda Crnic Institute. By enrolling your loved one, researchers can better understand why people with Down syndrome are protected from certain medical conditions while being more susceptible to others. Click here to learn more.

Why should your loved one be involved in Down syndrome research?

Because of these startling facts:

100% of people with Down syndrome will have the brain pathology of Alzheimers by age 40.

30% of people with Down syndrome suffer from immune disorders

30% of people with Down syndrome fought leukemia; while all other types of cancers remain rare or non-existent for this population.

The big question is WHY? Researching Down syndrome may unlock answers to America’s top killers.

“Despite our advocacy, funding has been flat over the past decades. Despite being the leading cause of developmental delay, our funding has plummeted while NIH budget increase” laments Whitten at yesterday’s appropriation’s hearing.

Read Related Post Here: Ending Organ Transplantation Discrimination For People with Disabilities 

Executive Director of Linda Crnic Institute for Down Syndrome, Dr. Joaquin Espinosa, made the argument to committee members that increased NIH funding would also do more than help unlock clues to Alzheimers and cancer:

“There are 4 times as many people living with Down syndrome today as in the 1950s. Life expectancy has more than doubled since 1980s. People with Down Syndrome are here to stay. Simple interventions improved life expectancy. With specialized research people with Down syndrome will live longer, better lives. How much longer should people with Down syndrome wait to get their fair share of the biomedical research dollars? I think the time to act is now!”

Again, John Franklin Stephens brought the message home as a man living with Down syndrome:

“Let’s be America. Not Iceland and Denmark. Let’s solve problems and find solutions, not allow for “final solutions.” The number of people with Down syndrome is getting larger, not smaller, and so is the need. The American citizens living with Down syndrome deserve to know that their is funding and medical care available to them that allows them to reach their full potential. Let’s make our goal to be Alzheimer’s free, not Down syndrome free,” Stephen’s implores!

Members of both parties seemed overwhelmingly supportive of Stephens and other advocate’s plea for more NIH funding. The House Appropriations Committee will now move to vote on whether or not to increase funding for Down syndrome research within the NIH budget. I’ll keep you up-to-date on their vote.

Have you registered your love one with Down syndrome for DS-Connect or the Human Trisomy Project? Tell me what you think below.

 

 

 

 

 

 

 

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How to End Organ Transplantation Discrimination in Your State

Did you know that people with Down syndrome face significant barriers to life-saving organ transplants? I was shocked when I first heard that this was a “thing.” How could anyone decide one life is less worthy than another solely based on their disability?

That’s why six months ago I called my state representative, Niraj Antani, and asked him to draft a bill giving greater legal protections for life-saving organ transplants to people with disabilities. Ohio House Bill 332 was born, and recently went to the Ohio House Health Committee. You can read the bill here.

Autism Advocate, Jennifer Powers Alge, Representative Niraj Antani, and myself at the proponent hearing for Ohio H.B. 332

As the bill was being drafted I learned about a story of organ transplantation discrimination just north of where I live in Sidney, Ohio. Little Ellie’s mom was told shortly after she was born that Ellie couldn’t receive the heart transplant she desperately needed to stay alive because she has Down syndrome. Read her story below.

Read Related Post Here: Little Ellie is Denied the Heart She Needs

3-year-old Ellie

As soon as I connected with Ellie’s mom Jackie Ward, I knew she had to share Ellie’s story with Ohio legislators and the world. Ellie would be the change-maker! Jackie was hesitant to share at first, but over time she realized the impact Ellie’s story could have on the passage of H.B. 332. Yesterday, I was thrilled to walk the halls of the Ohio State House with Ellie and her family.

We testified in support of House Bill 332, and there wasn’t a dry eye in the committee room. I felt so privileged to give testimony in favor of Ellie and thousands of other people with disabilities that face barriers to life-saving health care. My speech  gave details that included the six other states that have passed similar legislation (Oregon, Pennsylvania, Maryland, California, New Jersey and Massachusetts). Two other states (Kansas and Delaware) are currently working on a bill in their state legislatures.

We also had a fellow advocate and Autism super-mom, Jennifer Power Alge, provide the perspective of families with loved ones with Autism. Down Syndrome Association of Central Ohio Executive Director, Kari Jones, gave insight into the amazing achievements of people with disabilities, and how all life is inherently worthy of life-saving health care. But by far, the star of the show was Ellie and her mom who told her story.

Read Related Post Here: Ending Organ Transplantation Discrimination

The Americans with Disabilities Act actually provides broad protections for individuals with disabilities, but there’s no specific protection for access to organ transplantation. In fact, a group of 30 Republican and Democratic U.S. Representatives signed a letter just last year to the Department of Health and Human Services asking them to issue federal guidance to protect individuals with disabilities against organ transplantation discrimination. Unfortunately, nothing came of that letter. That’s why states need to act.

If you’re interested in advocating for a similar bill in your state I would start with the related posts above, as well as the following toolkits: ASAN Organ Transplantation Toolkit and NDSS Organ Transplantation Toolkit

I would also encourage you to watch testimony from Ellie’s mom below, as well as an Oregon mom who’s non-verbal Autistic son was refused a heart transplant in Oregon and ended up leaving the state and getting the transplant done in California. Both are extremely moving and puts a human face on an otherwise dry bill. Watch the Oregon mom starting at 38 minutes and 51 seconds here.

Our bill received a warm reception from Ohio House Health Committee members, who were also shocked that this was a real “thing.” The committee moved to the next step in the process, an opponent hearing and then a vote. So far, there as been no public opposition from transplant centers or doctors. Really the bill is not an attack on either of these institutions. There’s no penalty clause in the bill, but it does allow families to seek legal recourse to secure an organ transplant if they feel their loved one has been discriminated against. It’s more about ensuring families know they have greater legal protection to help advocate for their loved one when they need it most.

I will keep you posted on our bill as it moves forward. What are your thoughts on this issue? I love to hear from my readers, so leave a comment below or send me a private email. 

 

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United Airlines Crew Kicks Eagle Scout with Down Syndrome Out of Exit Row Without Explanation

United Airlines crew allegedly decided with one look that George Mason LIFE grad and Eagle Scout, Sean Cross, was not able to sit in an exit row seat on a recent flight. That’s because the 25-year-old has Down syndrome.

Instead of presuming competence, or at least asking Cross if he was willing to assist in an evacuation, the flight attendant refused to talk or even look at the paying passenger.

Sean Cross, George Mason LIFE Graduate

As relayed by Sean’s mother, Brenda Cross, a flight attendant demanded that the Cross family give up their seats immediately, without explanation. When Sean’s father, Patrick, asked why, they were told “He can’t sit in the exit row.” When the flight attendant was asked to speak directly to Sean, the flight attendant would not look at or speak to Sean. Subsequently, the Cross family were told they would be removed from the plane if they did not move immediately. This was done loudly and very publicly, in contradiction to United’s policy to speak quietly to passengers asked to move. The result was other passengers yelling at the family.

Read Related Post Here: How Loving Someone With a Visible Disability Forces You to Stand Out

Sean Cross and his family at the Eagle Scout Court of Honor

“They loudly announced that we had to change seats or be forcibly removed. When we asked them to talk to Sean they walked away. They then announced over the speaker that there would be a flight delay. Other passengers became irate and yelled “just move”. We moved. The pilot then got on the speaker to tell everyone to thank the volunteers who gave up their seats for us, to which people applauded, as if we were the cause of the problem. It was humiliating. It was discriminatory. This is a clear case of ableism on United’s part,” describes Brenda Cross, Sean’s mother. 

What’s United Airlines’ policy on sitting in an exit row?

“The government requires any passengers seated in an exit row to be 15 years of age or older, be willing to assist in an evacuation and have no limitations that would prohibit their assistance. Before allowing passengers to travel in exit row seats, United must determine if they are able to take all required actions in the event of an emergency.”

There are 2 separate times when the airline is supposed to ask about exit row. First, as you scan your boarding pass at the gate. They did ask Sean there and he responded “yes”. They are supposed to ask again at the seats, which they never did. That’s when the Cross family were told to leave.

According to the Cross family, the flight crew at no time inquire as to whether or not Sean was capable of providing assistance to others in an evacuation. He was demanded to move simply based on the way he looks. 

If they would have asked Sean they might have learned that he if fully capable: an Eagle Scout, George Mason LIFE graduate, employee who lives independently. Even if they didn’t think he was capable after speaking to him, at least they wouldn’t have assumed incompetence based solely on a visible disability.

The flight attendant that initiated the action later told United Airlines Representatives later that she based the decision on “previous interactions with a person with Down syndrome and it had nothing to do with Sean.”

Read Related Post Here: Ending Organ Transplantation Discrimination

The National Down Syndrome Congress has issued a letter to United Airlines CEO, Oscar Munoz, demanding an apology for the family and something even more impactful:

“We believe that United should review its diversity sensitivity training and, when re-tooled, send this flight crew. We would like to know what steps United will take to ensure that no other person with a disability is treated in this manner,” wrote NDSC Executive Director David Tolleson.

Here’s my call to action:

Tweet: @United ableism is not acceptable. Apologize to Sean Cross #UnacceptableUnitedAirlines #ShameOnYouUnited.