Jane Winans discusses that it’s time to undo Down syndrome bias seen in medicine, education and the community.
Bias About People with Down Syndrome
As individuals across the world examine beliefs, actions, and the systems that perpetuate implicit bias, I implore you to expand that process to include people with Down syndrome.
Although Down syndrome is a genetic condition, research on epigenetics and the over-expression of the extra 21st chromosome has identified interventions that maximize physiology and improve health for our children. Body and mind go hand in hand, and as children with Down syndrome are healthier in body, many are also stronger in mind.
As one would expect, the spectrum of abilities seen in the Down syndrome community continues to grow. Acceptance of each unique individual requires us all to ask questions, listen, and be aware of our conditioned beliefs and systems in place that often blur our vision.
The Social Unjustness of Diagnostic Overshadowing
Diagnostic overshadowing, defined as leaving co-existing conditions undiagnosed and untreated once a diagnosis is made of a major condition, such as autism or Down syndrome, is very prevalent and supports a system that expects and accepts poor health in our children. This is socially unjust. When doctors brush off a symptom as “just Down syndrome” and look no further, they often deny access to medical care.
Children with chronic runny noses can often benefit from allergy testing or cranial sacral osteopathy. A child with low tone, pale skin, fatigue, and missed milestones should be tested for hypothyroid just like other children.
When my child’s ear infection needed immediate attention, the scheduler decided my child would not respond well to a new doctor because of her diagnosis alone. In order to maintain a doctor my daughter knew, she only offered appointments three days later. This treatment, whether or not it is perceived as accommodating and tailored, is actually medical discrimination. The hurried pace of doctors’ offices and limited time to see patients adds to the systemic stereotyping and diagnostic overshadowing.
How to Advocate for Your Child
As a parent, I recommend you do your research, request extra time for appointments and prepare questions, possible solutions, and supporting documents.
Ignoring our voices.
They and them and those
Segregation a mighty foe.
Over here – not there –
Even if there
is when and where
Her skills ignite and fit just right
“But she has Down syndrome.
That yoga class is not tonight.”
“But she has Down syndrome….
No appointments for you today.
Her doctor would be new today.
It wouldn’t matter, is that what you say?”
Ask and listen, I implore you today.
It’s time. It’s Time. IT’S TIME!
To abolish outdated and accepted castes
To blaze new and empowering paths
To embrace without labels, free from the fables
of what we were taught and told
and allowed to unfold.
Ask and listen, I implore you today.
See the individual.
Find a way.
(Jane Winans, 2021)
Let’s take an example of a child with Down syndrome with stool, growth and gastrointestinal issues. Instead of accepting this as “just Down syndrome”. probe for root-cause issues, such as Celiac disease or gut dysbiosis.
Many doctors still don’t suggest a gluten-free diet unless the child tests positive for Celiac disease. To test positive, it means that 80% of the villi have already been damaged, resulting in malabsorption of nutrients. Because Celiac disease is so prevalent in the Down syndrome population, many families adhere to a gluten-free diet as soon as possible. Even though following a gluten-free diet to mitigate compromised gut health is becoming a more common practice, parent-advocacy groups and organizations like Epidemic Answers are where parents are first learning about this.
I think it is important that we acknowledge the majority of health systems in place accept poor health for our children yet there is much we can do to maximize physiology for our loved ones. Whether you are a medical professional or a parent, it’s time to ask, listen, and explore formerly held beliefs about health in people with Down syndrome.
Bias in the Education System
Education is another system worth exploring. The phenomenon of behaving and achieving in ways that confirm other’s expectations is known as the Pygmalion effect (Brehm & Kassin, 1996). Longitudinal studies support the self-fulfilling prophecy hypothesis that teacher expectations can predict changes in student achievement and behavior beyond effects accounted for by previous achievement and motivation (Jussim & Eccles, 1992).
Down syndrome is a big diagnosis. Here are some questions to ask yourself about your child’s education:
- Does your child’s teacher truly believe your child can learn?
- Does the inclusion model offer equal access to the curriculum or do other modifications need to be made to achieve goals? Is inclusion meaningful socially and academically?
- If your child has not made gains with a curriculum or intervention, have other methods been explored or is it assumed your child’s learning is limited?
- Have you shared learning or behavior strategies that work well for your child?
- Have you encouraged open dialogue to promote collective brainstorming for better outcomes?
- Are extracurricular activities accessible to your child?
When my child was young, I felt one of the largest hurdles we had to jump was convincing people she could learn and be included. It’s time for that hurdle to be removed.
Integration and inclusion at the community level continues to be a focus for many advocates of people with special needs. There are several practices and organizations that, although well intended and innovative at inception, perpetuate segregation.
Special Olympics is one example. The fact that it provides opportunity for all individuals with an intellectual disability is truly beautiful. However, inclusive recreational activities at the community level are lacking because municipalities feel kids with special needs have Special Olympics, which although helpful, is not integrated.
Another example is the special-needs snack shop in many high schools. Again, although a novel attempt to give our kids a place to belong thirty years ago, it remains segregated, often with another snack shop nearby. It’s time to rethink integration and belonging at the community level and make changes that remove barriers.
The Time Is Now
The time is now. To ask and listen, to see the individual, not the diagnosis. To rethink beliefs and practices concerning people with Down syndrome thereby promoting true acceptance, understanding, and integration of all abilities. It’s time.
About Jane Winans
Jane Winans is an education and personal-development coach who helps individuals embrace their totality, focus on their strengths, and celebrate daily. She’s a public speaker, educator, writer, and co-founder of Down syndrome Options.
A wife and mother to three adult children, including Lydia age 18 who has Down syndrome, Jane speaks with wisdom, deep compassion, and levity. You can find more about her on her Facebook page and her interview about How to Skip Burnout and Fast Forward to Joy.
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