Every time I write a blog it comes from my heart. But this time is different. This time I am writing about something that has been simmering for a very long time, more than ten years. Jealousy in the world of disabilities.
The first time I saw jealousy clearly raise its ugly head was in Boston. 2008. I was at a National Down Syndrome Congress convention whose theme was “We’re More Alike Than Different”. I was very excited because the keynote speaker was Emily Kingsley, the amazing woman who wrote “Welcome to Holland”.
I was at the expo shopping right before her speech. I stopped at a stand close to the auditorium. A young adult with Down syndrome was selling cards he had made. I stopped to look at them. I decided to buy some. His mom took over. She was very brusque – and chided him as he was taking care of the transaction. I very politely asked her if I could come back and pick up my purchase because I did not want to miss Emily Kingsley speak.
She looked at me with pure contempt. She then huffed, “Emily Kingsley! I hate that woman. She does not know what she is talking about. Tulips and flowers. Look at my son. He is useless. He cannot even count the money. I don’t understand why people love that woman.”
I was stunned. This woman was the epitome of vitriol. I looked at her son. Oh my goodness, he was hunched over, from pure sadness. I told her that her son was a good artist, and that was why I not only stopped, but was buying something. I looked at him and told him I wished I could buy it all—he truly was a good artist.
Then I rushed into the auditorium in time to see Emily Kingsley speak. As if God had timed everything that day—she came out and spoke about jealousy in our community!!!
She spoke about all of us being in the same boat. Some were in the front, some in the back, some in the middle, some falling off, some climbing on….she gave a great description. Her main point was that no matter where we are on this boat—we truly are in the same boat. And we need to work together instead of pushing each other off, or not supporting each other. She said this would be her next essay. Sadly, in 2019 I have not seen it yet. If some way this gets to Emily Kingsley—please write that essay! I am sure I did not paraphrase you perfectly. We want to hear your words!
Fast forward to the National Down Syndrome Congress convention in 2017 in California. The Born This Way stars are there. They are very popular-naturally. We meet them, take pics with them, even getting to talk with their parents. But I start to hear rumblings when meeting other new people that “they wish the featured speakers were not so high functioning and beautiful. They wished they were lower-like their young adults.”
I don’t know why, but every time I hear this type of sentiment I am still surprised. Maybe because their jealousy is on such clear display. I always tell them that my daughter, and we, need role models. You learn from those ahead of you who are successful—very successful. You need to have high expectations. The conversations always drift off to not much after that.
I have gotten to know Sandra McElwee over the years because she mentors many parents behind her. Years ago she shared this sad story. She said that when Born This Way was about to premiere the parents all got together and vowed to support each other against the insults and negativity that would come from the outside world. She said they never in their wildest dreams thought the worst hate would come from our own community. The jealousy turned to hate was very depressing. Especially when we had a groundbreaking show, the first of its kind, breaking barriers for ALL with disabilities, and winning Emmys to boot, that also needs great ratings.
Today Sandra posted this on social media, next to the meme of the quote about functioning levels I have featured in this article. ‘It happened again last night. I met a mom with Down syndrome. I know immediately when they don’t recognize me that they haven’t watched Born This Way. My friend told her Sean was in it. She responded.” I’ve heard of it but the kids in that show are higher functioning than my son and talk better than he does so I never watched it.” STOP IT PEOPLE. JUST STOP IT. I’ll support your child in any endeavor – don’t hurt mine because he’s been edited well.’
Let’s all remember this. We need role models. Our youth need role models. Aren’t role models something to look up to? My daughter and I get so excited when we meet young adults who are doing extraordinary things like winning Emmys, starting great businesses, starring on TV shows, etc. We know these successes are breaking barriers and building a better world—for all! Heck, you know that is why I started Born Fabulous Podcast-to celebrate those successes.
I want to end with this meme and quote by Sandra McElwee. “One thing I think Born This Way has done a fabulous job of is introducing the world to people with Down syndrome in the comfort of their living room. That, in itself, is making a huge difference.”
If you have been at all resentful or jealous, and have not watched the show, choose to flip your script now. Or if you simply missed the show, and are just now hearing of it – watch seasons 1-4 on A & E. Write the network and tell them you want a season 5. Choose to be grateful and positive. Then watch that positivity rub off on your child or young adult, for the better…
Thank you for caring.
From my heart,
* Thank you to Sandra McElwee for her time, wisdom, honesty and stories. She is a wonderful mother, author, and advocate. Thank you also to Sean McElwee for being the amazing young man he is, and for allowing us to have this discussion.
If you have not heard episodes 1-8, you can go to the link at the bottom of this page and it will lead you to the episodes. Or go to www.bornfabulouspodcast.com. The podcast is also on iTunes, Alexa, or any podcast directory. I invite you to subscribe on those podcast directories. Born Fabulous also has Facebook, Instagram, and Twitter pages as well as a YouTube Channel. Up next week is Jeannie Harris, the mother of world famous Tim Harris. Tim owned a restaurant called Tim’s Place, which listed hugs on the menu. He is now a sought after public speaker. Tim has Down syndrome.