On Tuesday, December 8, 2015, at 10 pm on A&E, individuals with Down syndrome break down another barrier: they star in a reality-TV show called Born This Way.
Dave Walker at Forbes introduces the series and ends with a critical question in his review:
To its credit, Born This Way, a new six-episode series about young people debuting Tuesday night (Dec. 8) on A&E, doesn’t shy from reality-TV conventions and cliches. There are confessional interviews with the cast in which they share their truest selves with the camera. There are self-described players and divas. There is weeping.
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The cast members of Born This Way – sweet Rachel, sportsman Sean, rapper John, confident Steven, empathy-ready Cristina, ambitious Megan and drama queen Elena – may not vie with Kim and Khloe [Kardashian] for pop-culture ubiquity, but the point of the show they’re on is to ask, “Why not?”
The show, in answer to this question, may serve a critical role in the ethical administration of prenatal genetic testing.
In 2009, the Down syndrome consensus group convened with representatives from the major medical and Down syndrome support organizations to address the advances being made in prenatal genetic testing. One of the initiatives they identified as needed for the administration of prenatal genetic testing to not reflect and enable bigotry against those with the tested-for condition was a public awareness campaign to dispel the stigma of disability.
While the consensus group envisioned more of a public service announcement campaign, pop-culture measures like Born This Way can serve the same purpose when responsibly done. According to this review by Matthew Gilbert in the Boston Globe, the show has that potential (and the last line really resonated with me):
the show nonetheless manages to stay dignified and realistic (in a reality-TV kind of way). It essentially toggles between two views. First, that people with Down syndrome in their 20s are like other people in their 20s — dreaming of careers, dating, loving hip-hop. And second, that people with DS have special challenges in life, as do their parents. Elena and her mother aren’t the only ones with issues; the ambitious wannabe filmmaker Megan, 22, for example, deals with a mother, Kris, who’s desperately afraid to let her live on her own and have children. “I don’t want the whole society to limit me because I have this,” Megan says to the camera.
Having a daughter who happens to have Down syndrome, I, too, don’t want society to limit her because she has an extra 21st Chromosome. Perhaps, Born This Way will change the opinions of some who might have otherwise.
David Wiegand’s review in the San Francisco Chronicle suggests the series may just break down more than the barrier of inclusion in reality-TV, but the barrier of us seeing those with Down syndrome as “them” instead of a part of us:
“Born This Way” was in fact created by Bunim-Murray Productions, the people behind “The Real World.” In so many ways, the six episodes of the docu-series could have been an exploitive misfire, but that possibility appears to evaporate within the first few minutes of the pilot. The series is an example of what television can do well and ought to be doing more often.
An eye-opener that’s also funny, real and compelling, the series is a heartwarming reminder that no matter who we are, we’re all born this way.
You can learn more about the cast and the series at the show’s website, here.
If you saw any of the episodes, I invite you to share your thoughts by leaving a comment below.
Thanks for covering this Mark–after being involved with the taping of Born This Way for the past several months and seeing the production crew so sensitive and truly looking to portray the cast in a realistic light I feel strongly this show will be a game-changer for anyone with Down syndrome. I just hope every Geneticist and OB watches so they can see the potential each person with DOwn syndrome’s lives hold.
Maybe send an invite to ACOG and NSGC via their websites or twitter feeds?
YES THE MEDICAL COMMUNITY as well as EDUCATORS need to watch this show but certainly the medical community as us parents are in the face of education always but this show CAN HELP!!
as always, on point, Mark 🙂 shared.
Thank you, Karen, and thank you for sharing!
This is awesome -I can’t wait to watch. My child has other special needs and wish a show would be done like this for kids with what I call “on the border issues”: academically capable, but not able to do well in public school, socially, emotionally, and physically due to developmental disabilities like various conditions such as multiple disagnosis such as autism, Asperger’s Syndrome, anxiety, OCD, adhd/add, Tourette’s Syndrome, Dyslexia, Math and Verbal disabilities, Non-Verbal Learning Disabilities, Bi-Polar Disorder, Depression, etc. There is a population of children and teens that don’t fit in our public school system well: socially, academically, athletically, and vocationally. And the current “No Child Left Behind Program” and Special Education funding varies and is administered differently from state to state, even though there are federal and state laws to enforce that these children should receive an education like children without these conditions. Many times it depends on the principal and teachers in the local school your child attends and their attitude, knowledge level, training and commitment to support and help our special education children, as to what type of education and treatment they are given– versus equal education opportunities across the U.S. Some parents have the money to put their child in private schools dedicated to teach and support their child, take them to educational counselors, occupational, speech, writing and physical therapists and tutors after school and on the weekends, but can’t afford this. Many parents spend time in appointments with psychiatrists, psychologists, doctors, etc. with their children depending on their diagnosis and do not have the time & extra money for these needed services and have to fight for their public school to provide these services or even get an attorney to help them fight for their child to have them provided in the public school system. Needless to say, depending on what is provided or not provided for the child can enhance or lessen their success in school, life, socially and in their work life in future. If proper resources are not provided, because a child seems to be able to learn & is on the borderline academically (and this happens many times even when they have more severe disabilities and have learning difficulties, as well, & the public school system still makes the parent fight for resources for their child to learn in school), a child tends to feel they are “different”, don’t deserve to learn, and they end of with self-esteem issues that can follow them into their adult life! Now the parent is spending time putting their child in emotional therapy, as well to survive in school socially to make friends, fit in with peers and maneuver successfully in life-when many of these diagnosis already come with social deficits and obstacles to overcome for the child.
My child is 16, in private school, has adhd/add, anxiety, OCD, minor depression & left the public school system in a county in GA that had a fairly good special ed program, but they could not support his needs even though he was an A/B student until 3rd grade. I believe and so do many parents of children with these multiple diagnosis, believe that our children can learn in school when they are not supported by the administration, the teachers are not the administration are educated to understand the needs our child or they believe these diagnosis cause our children to misbehave in the classroom and be disruptive versus our children are reacting differently due to neurological, physical and emotional conditions they can not control. We also believe that if the general public, school teachers, administrators, and other parents could see a show explaining how our children want to be included socially @ school and how much their disagnosis/conditions are misunderstood, similar to what you are covering in the Down’s syndrome series, changes would start to be made and people’s attitudes and actions might change @ school and in the community.
Great points and work HARD with your school district to get what support you need whether you are private or not. Go to dispute and fight and win. You got this and I pray all educators through admin ALL watch this must see program. Email the link to online versions all available to everyone with a computer.
Then share with all your relatives and friends and particularly THE MEDICAL
COMMUNITY. Let’s break down this fear based aversion to disabilities and love our human race as is.
Time to be treated civilly and not treated with termination. Adoption is a huge valid option for infants and children with disabilities. There are HUNDREDS of families looking to adopt and or spouses looking to become a FAMILY. Love and support us all by sharing this show
It is nice to see a show about ds. I do hope you show the inclusive side. Not all people with ds hang out with other people with ds. My daughter now 19 with ds, does not have any friends with ds. She has her own pampered chef business and loves being in the community. Please show that side too. But good show, beautiful actors and a message that needs to be said. Oh and by the way, I support my daughter having children. She has helped me take care of foster babies that were addicted at birth. If we do not limit mothers that abuse their children why should we limit a person who can take care of them. Its an amazing picture to see my daughter feeding these unwanted babies. So good to bring up the subject. good show.
I have a 9 year old lil girl with downs
I am currently pregnant with our first child and genetic screening came back positive for T21. While we opted out of amnio so we do not have 100% confirmation, we are preparing ourselves (especially emotionally) to care for a special needs child. A friend told us about the show and I am so relieved to see how these adults with Down Syndrome are living their lives even independently. My main concern was who will take care of our child should something happen to us??? I now see that the answer is that he may actually be able to take care of himself. Although termination of the pregnancy was never an option for us, seeing the show makes me feel even better about our decision to keep our baby.
You never know what will happen to any of your children. The answer is as parents we need to make sure our children can function and be as happy as they can . That is a struggle with every child. Just relax enjoy the wonderful baby that you will have. Just be! Don’t be a parent of a child with a disability be just a loving parent and all will be.
Anna–yours may be the best review the show ever receives. I’m glad you found this series helpful. The issue of who would care for a child while he is a minor is the same as if you had a child without Down syndrome, i.e. you can name a guardian in your and your husband’s wills. You can do the same once your child reaches 18 years old, but depending on your own health as you age, you can have a guardian appointed with full or limited authority depending on the needs of your child. I would recommend consulting with a trusts & estate attorney for further advice on these guardian issues. Financially, your child will qualify for social safety net programs like Medicaid and SSI through Social Security and, with the passage of the ABLE Act, a college-savings type fund can be established for defined expenses, providing for the most independent-style left yet for individuals with Down syndrome. Lastly, you and your husband can structure your estate through a special needs trust to also provide financially for your child, with various life & disability insurance options for yourselves also providing a means for supporting your child should something happen to you. If you haven’t already, I would also refer you to downsyndromepregnancy.org and that website’s helpful articles and books for expectant parents who have decided to continue with a prenatal test result.
Oh Anna I agree with Mark! I am so thankful you found this blog and definitely go to the DS website he listed for support for you and your extended family and friends. The booklets there to download or order are so very incredible and written with love and hope. The Baby Center DS group mentioned on that site is the best I’ve heard too. I know some of the moderators and they are such beautiful loving souls and are able to steer that tricky forum into peace and harmony.
I recommend the two books called Gifts and a third Road Map to Holland by Jennifer Graf Groneberg. I found gifts also s bit daunting at times but eventually read every word when in the right frame of mind. Be gentle with your and your spouses shifting moods–it’s all okay and helpful to get to the right places together long term. No rush on this journey besides a cure for Alzheimer’s I say!
gifts and other series of books specific you will want to browse eventually are all at
http://www.woodbinehouse.com
but also local support centers in every state have amazing libraries (or your own might be able to get many too?!!).
Now while I had another blog post I preferred much better to the Road to Holland poem I found a phenomenal post recently. It might be a bit much now but keep it handy
http://carlyfindlay.blogspot.com/2015/02/a-message-to-parents-on-rare-disease-day.html
The old post was Amsterdam international by uncommon sense and also a bit much but likely things you are dealing with already like spouses not being in the same mood at the same time about the path you face together….
http://niederfamily.blogspot.com/2010/10/amsterdam-international.html
Love and hugs to you and welcome to this interesting path of love.
I just wanted to say that I absolutely LOVE his show! It opens ones eyes and opens your heart. They are amazing and they teach us that all dreams and accomplishments can be reached! I look forward to each and every show!
I must say that Megan has touched my very soul, I love her to pieces!
I really love this show, didnt think I would but I find myself glued to it, really feeling for and rooting for them when they reach their goals. Thanks for educating us on how you view life, its great seeing things through your eyes. Hopefully the world will be more engaging with more insight on living with DS. I hope they film more episodes, Love you guys! <3
I do not have down syndrome and nor do my children have it. However, my girls and I watch the show “Born This Way”. We love the show and I am truly inspired by those group of beautiful individuals. I don’t know how to contact the cast,but if they could read this, I would be extremely grateful. I was moved by their passion and drive for life. They sent an important message to me. They made me realize that pursuing my dreams are very doable and it just takes hard work and persistence. I knew that already, but watching the show made it clear for me. Each character on the show was different and inspirational. They all brought something to the table and formed a strong loving bond. It made me see that there are good people in the world when all we focus on is the bad. I was truly moved and feel blessed to be able to have watched them share a piece of their lives with the world, and for that I am beyond thankful.
Forever grateful,
Mela
Loved the people on the show! The showleft me wwith more questions than answers, though. First and foremost, who is” limiting” these fine people? In what way? Did Megan actually write the speech, because at the end of the show she is using Que cards and is lost without them. Does any of them achieve the dream they set out to do? Maybe Season Two will answer this, but they did not even hint that there will be a Season Two. At the dinner table with just the parents, it was obvious to me that at least one parent was pro life, but they only let the pro abortion mom speak. Don’t limit life! After all, it looked to me like every parent at that table chose life. Obvious opinion editing done there. My favorite person on the show was Christina’s dad! What a good person he was. Would like to shake his hand. The proposal was great!
I believe it’s been reported that the show was picked up for another season.
I do enjoy this show and the characters on it. However, one of the cast members makes the statement, “I just want to be loved…”
I had a hard time listening to this statement in this context, as the truth is these young people are more loved by more people than they can possibly imagine. Think about this for 2 minutes… Some people have never experienced love at all… Not once in their life, not from even one person…
These folks are surrounded by love, at every step of their life. Through thick and thin. I would trade that form almost anything…
I watched every episode of Born This Way and was very impressed with the way Down’s Syndrome was addressed. I have never had contact with anyone with Down’s and had some preconceived notions. I learned an awful lot from this program and look forward to the next episodes. I expect those on the show are considered “high functioning” and would like more information on those who may not function to that level. What can we,as a uninformed public, do to provide the most and best assistance to persons with Down’s or other “disabilities?”
Thanks so much to the people who were instrumental in giving us this look into the lives of those with whom we may not have previously had contact.
A survey of self advocates, their parents, and siblings, reported that regardless of functioning level, individuals, parents, and siblings overwhelmingly love their loved one with Down syndrome and the individual with Down syndrome overwhelmingly loves their lives. Volunteering at a local parent support organization would provide the opportunity to meet individuals with Down syndrome. Probably the best way you could help them is by spending time with them.