21 Ways I Want to Change the World for the Down Syndrome Community

The internet is saturated with memes with the quote, “I wouldn’t change you for the world, but I would change the world for you.” I love this quote and always ponder its meaning when it comes up in my social media feeds, but I am not sure who originally said it or whom to credit it to. My son Blake has Down syndrome. I would not change him for the world, but I am working hard through advocacy efforts to change the world for him.

In honor of Down Syndrome Awareness Month, I wanted to share the 21 things I want to change about the world for my son and the community of people with Down syndrome. Down syndrome occurs because of an extra copy of the 21st chromosome, also referred to as trisomy 21 or T21. These 21 items are in no particular order, as they are all essential to building the respect and inclusive world I personally desire for my son.

1. Dispelling Fear: People fear what they do not know. It is hard to fathom, but even in this age of instant information, often people know very little about Down syndrome unless they are connected to the community in some way. Dispelling people’s fear is something I would change through education, advocacy, awareness and getting to know this wonderful community of exceptional humans.

2. Attitudes: Attitudes are changed through education and exposure. Changing deep-rooted feelings and beliefs is a difficult task. But it is a challenge I welcome when it comes to sharing about the amazing people I know who have Down syndrome. They have value, competency, dreams, goals, and feelings, just like we all do. People have preconceived notions and attitudes because they lack the information and experience. I will work hard to change this, one heart and mind at a time.

3. Access: I would like to increase access to everything and the world in general for people with Down syndrome — access to employment, training, education, and society in general without the outdated perceptions of deficit.

4. Education: The current education system in the U.S. is in need of serious repair and overhaul, in my opinion. Having to fight for your child to be included with their “typical” peers is an all too familiar story. I believe the IDEA Act (Individuals With Disabilities Education Act) should be amended, and I believe there should be penalties for districts who do not follow it. To me, a general education is a right and not a privilege our children have to earn. School should be a place for more than the acquisition of life skills but a place of creativity, support and growth for all students.

5. Stereotypes/Myths: There are so many stereotypes about people with Down syndrome and still too many generalizations floating around. For example, “People with Down syndrome are always happy,” which is not true. My son is happy sometimes and then he is not, just like everyone else. As advocates, we need to be professional and persistent educators and myth busters. For example, a long-standing myth about this community is children with Down syndrome are only born to older mothers. In fact, according to NDSS.org, 80 percent are born to mothers under the age of 35. We must continue to abolish myths about this community and replace them with facts.

6. Proof: I want to lift the burden of proof off the shoulders of parents who constantly feel they have to prove the worth and value of their children to society as a whole. I can’t speak for anyone but myself, but it is depleting to feel like I am constantly trying to show others Blake’s worth and value.

7. Doctors: As a mother and advocate for my child, I often feel like I am doing the job for the professionals. Doctors need to be provided with more training, accurate and up-to-date medical information, as well as have an improved bedside manner when delivering a prenatal or post-natal diagnosis. This is crucial to how our children are perceived. They should provide parents with accurate information so they can make informed decisions, remove their personal bias and opinions, and be supportive of the parent’s decisions.

8. Educators: Again, as a parent advocate I have had to “educate the educators” constantly in my son’s five years on this earth. It is exhausting and seems to be never ending. I dream of a world where all educators are informed, motivated, creative and ready to provide service to all learners, incorporate universal design into their classrooms and adopt an all-means-all mentality.

9. Laws: As mentioned above, I would like to see some current laws amended (IDEA, for example) and some new laws put in place. For example, mandatory training for police officers, emergency responders and anyone in similar positions. Not just sensitivity training but appropriate behavioral strategy training on how to deal with situations involving people with Down syndrome and other differently-abled individuals. The Ethan Saylor case was a loud call to action.

10. Funding: I would increase funding to social, education, training, and employment programs for people with Down syndrome. A large part of the funding would be going into educational supports for students so they are able to successfully attend a general education setting for the maximum time appropriate. With great resources and support, this community will thrive and exceed expectations!

11. Perceptions: Our perception is our reality. In my experience, shifting perceptions comes with education and exposure, much like changing attitudes. If someone has had no experience with the Down syndrome community, they may have an inaccurate perception, hindering their ability to effectively or accurately understand. It is our job to help them shift their focus from disability to ability.

12. Other Parents: Changing perceptions and educating parents of “typical” children is vital to any change in our society. Young children in my experience naturally do not judge, see barriers or segregate instinctively. As a parent, model compassion, acceptance and respect for your children. If your child has a class with someone with Down syndrome, encourage your child to get to know their classmate.

13. Celebration of Differences: I work to shift the focus from the generic “sameness” we see in our society to the celebration of diversity, differences and what makes us each unique. We should spend less time judging differences and start celebrating them!

14. Inclusion: Inclusion can be beneficial for students with Down syndrome in a classroom setting and beyond. Inclusion also benefits the other students, teachers and community members. It is more than a placement; it is an attitude. My son must learn to function in society alongside his “typical” peers, so to me, the sooner the better for inclusion in all facets of society.

15. People-First Language: The use of people-first language is essential to everyone no matter what the circumstance. My son Blake has Down syndrome; he is not Down syndrome or a “Down’s kid.” If we can change the language, we can help change the perception and put the person first, not the diagnosis. Also crucial is the elimination of words like the R-word from the global lexicon. When we all know better, we can do better.

16. Opportunities: I would like to increase opportunities for my son and this community — opportunities for inclusive sports teams, employment opportunities, creative opportunities and community opportunities. I feel like opportunities will increase (not because the law requires it but because of real desire to include) when education and awareness increases, causing a shift in perceptions and attitudes.

17. Employment: This means changing the way potential employers perceive people with Down syndrome. Seeing someone through the lens of ability and not deficit or disability is key to opening professional doors. What if an employer saw only strengths and how they could be built upon? People with Down syndrome have something to contribute to their communities, which includes a wide range of working environments.

18. Expectations: I would like to increase the world’s expectations for this community. Always assume competency and build on each individual’s strengths and current levels. People with Down syndrome are capable and able to learn, develop skills, set goals and achieve them. Keep the expectations high!

19. Compassion: An increase in the level of compassion in the world would be beneficial to all communities, including the Down syndrome community. To have compassion for someone is not to feel sorry for them. It is to exhibit care, patience and understanding regarding what they might be going through. People with Down syndrome have challenges and delays in certain areas and deserve your kindness and compassion. They can give you theirs in return for your challenges.

20. Fighting: I would change the exhausting amount of time and energy that is spent by parents fighting against bureaucracy, various administrations, regional centers, and almost every entity for services, rights and opportunities.

21. Acceptance: Accepting ourselves, as is, with no conditions or judgments is an arduous task for some. We cannot expect to accept others until we accept ourselves, so this task lies in the hands of each one of you reading this. Acceptance for the Down syndrome community should not come with conditions either.

Acceptance starts with us and radiates into the world.

Advocacy matters, and so does your voice. Who is ready to join me in a world transformational movement for our children or those we love with Down syndrome? Together we can make the world a more respectful, inclusive and amazing place.

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