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7 Reasons Why Down Syndrome Awareness Is Still So Important

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I woke up this morning tossing and turning, full of anxiety. It took a minute to realize that it was only a dream, a very realistic dream. For hours my daughter and I were meeting her new general practitioner, and she was testing her.  The doctor said my daughter’s well-rounded inclusive education was not enough. My daughter was now having to prove what “life skills” she had mastered, which ones she was working on, and which ones still needed to be on the list. I realized how out of line this was and questioned why this was even happening. Did the doctor make new 21- year-old patients without disabilities do this? My daughter had the right to choose her own doctor and receive good quality care. The doctor would not let us leave the room. The rabbit hole only ended when I woke up.  Luckily, in real life, my daughter’s appointment with her new doctor went very well today.

Why did this happen? Because my 21-year-old has Down syndrome and autism, and is shy, especially until she is comfortable around someone. These very facts and characteristics have made her, and me as her mother, have to prove her worth spiritually, educationally, medically, and in the adult world of continuing education and employment. This is wrong on so many levels, but that is the real world for people with significant disabilities.

And that is why October is Down Syndrome Awareness Month and National Disability Employment Month. Many people are simply unaware, and question why this is even needed. Others are so tired of this they say we are beyond the issue of awareness and need to move to acceptance. While I too am tired, it is because of the millions in this country, and billions around the globe who are unaware that we must keep trying to pass that first hurdle.

Hurdles are what people like my beautiful, smart, articulate, sweet, and funny daughter encounter even before birth. And they never stop coming.

1. Discrimination against people with Down syndrome starts before birth.

Before birth, specialists are too often robots without hearts and more often than not encourage abortions for babies with disabilities who are diagnosed via amniocentesis or other tests. Families in these situations rarely receive balanced information from the medical community, only grim and overly negative information.  At birth, too many families have horrible experiences with medical professionals when they find out for the first time their baby has a disability. That newborn joy is shattered in ways that are outdated and shameful in 2021.

2. People with Down syndrome are routinely denied organ transplants and other life-saving medical care.

And here is the most shocking discrimination of all, people in several states of the USA are denied organ transplants if they have Down syndrome or other disabilities. Yes, in 2021. The tragic story of baby Zion, who passed away October 8, 2021, in Florida is proof. Zion Sarmiento had five open-heart surgeries in his short three-plus months of life. Zion needed a heart transplant, but he was turned away by every hospital the family tried. This beautiful little boy was known for holding his arm straight up, even during surgery, for smiling, for being a true warrior, and a beloved little brother and son. His story has reached all 50 states and at least 48 countries and counting. Laws need to be changed — everywhere. Charlotte Woodward, a respected self-advocate in Virginia started this fight years ago, when she herself needed a transplant. You can learn more about the fight for federal protections here.

3. Families that include children with disabilities are often treated badly by churches and faith communities.

During difficult times, families often turn to their place of worship for comfort and guidance. However, too many families of children with significant disabilities have been turned away, ignored, or disappointed, to the point many withdraw and leave religion altogether. This is tragic, but sadly true and crosses all faiths.

4. Hurdles abound in the world of education for kids with Down syndrome and other disabilities.

Too many children with significant disabilities are automatically segregated, and those who are included in general education classes have to prove their worth year after year. Educators are still unprepared, and many are clearly unwelcoming and discriminatory. Administrators are often uninformed, or simply do not care. An inclusive pre K – graduation education can be exhausting. Beyond description.

5. Hurdles to higher education also abound.

After graduation, continuing education is often tricky for people with significant disabilities, depending on the state you live in. Even non-typical options place barriers.

6. Employment discrimination is rampant.

No employer admits they discriminate. On the contrary, everyone claims to hire people with disabilities. But look at the numbers. The unemployment statistics for people with significant disabilities are tragic. Even during this time where most employers claim shortages. This discrimination is hidden behind smiles, “little white lies,” and stereotypes haunting applicants before they even start. This ignorance needs to be addressed in corporate America, small businesses, and every level of government.

7. Accessibility for everyone with physical disabilities is still a huge issue.

This includes curbs, stairs, bathrooms, stages, airports and airplanes, and so much more. Too many forget that we all are one accident, or illness away from being physically disabled. And too many consider physical disability access “too expensive” and “optional.”

So when I woke up today, worried about a dream that was not going to happen — the stress was real. I know from following numerous self-advocates ahead of my daughter, combined with 21 years of experience with my daughter, that in 2021 people with significant disabilities still have to prove their worth far too often.  I have usually written about very positive inclusive experiences or successful people. But we clearly still need to all really work on awareness. Because the lack of this is literally killing babies, and holding millions of very capable and productive people behind. Let’s each start today by breaking stereotypes, helping to change laws, and making commitments to educate all the leaders, communities, and neighbors around us.

Getty image by Aaron Amat.

Originally published: October 27, 2021
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