Special Needs Etiquette Part II

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Below is the conclusion to my conversation with Teri and Amanda about special needs etiquette.  You can read Part I here.

How do you want parents to educate their own kids about your child and how he/she is different?

Teri: It’s important to know that individuals with Down syndrome are more alike their peers than different. It may take Kellen longer to learn or do certain things but those around him recognize his dedication and tenacity. I want others to appreciate the differences we all have and encourage one another to do our best.

Amanda: Lead by example. If you see someone with a disability in the community smile at them and say hello, engage them in conversation. Find a way to include people of all abilities in your church, school, and job. Point out the things about my daughter that are more alike than different. Yes, she may not be able to speak clearly yet but she still loves to dance, sing, play house just like most other two-year olds. One of the easiest ways to do this is to try to plan regular play dates with children of the same age. If these children grow up around Charlotte then it is only natural for them to reach out to others with disabilities and be an advocate for them in other areas of their life. Living side by side with people of disabilities becomes part of their normal life and hopefully little by little this will become the new normal for society as well.

When in public and a child loudly asks their parents, “What’s wrong with that person?” – talking about your child – what is the best way for that parent to respond? Would you want the parent or child to ask you or bring you into the conversation?

Amanda: Having never been in that situation before it’s hard to say for sure, but I think that I would want to be brought into the conversation if the situation allows. Growing up I was not around the special needs community much and had always been very uncomfortable when I was around somebody with a disability because I didn’t know what to say or how to act. I feel by including me in the conversation it would give that child a chance to meet my daughter and learn more about her as a person – rather than just a label – in hopes that the more that child is exposed to people with disabilities the better chance that he will grow up looking for ways to include ALL of his peers, no matter their abilities or disabilities  If the situation does not allow for a conversation right then and there then I think the parent just needs to focus on explaining to their child that everyone has their differences and [it] does not mean there is anything ‘wrong’. Some people excel in music, and others in sports. Joey might be a math whiz while Sally is a future scientist. My daughter’s almond-shaped eyes are no different from mine being blue and yours being brown. We are all different with our own unique talents and features that set us apart from the rest.

Teri: Curiosity is a natural human emotion so I don’t fault anyone for asking “what is wrong…”. I don’t think the parent should scold the child but it opens up the opportunity to explain that being different isn’t “wrong”. Disability is natural. Sometimes an individual with a physical disability might be open to explaining to your child why they are in a wheelchair etc. If the individual has a developmental disability, he or she may not be able to have such a conversation with you and your child but you can definitely encourage your child to smile and say “Hi” to the person. A smile brightens everyone’s day!

Do you think etiquette like this should be taught in schools, churches, etc? How do we get over the fear and awkwardness that the general public has towards people with disabilities?

Teri:  The best way to get over the fear is to eliminate segregation of individuals with disabilities and continue to integrate them into our communities in a manner that values their contributions. Because Kellen was included in his neighborhood schools and has been involved in community activities, he’s developed friendships and support that have enhanced his quality of life.  I think what needs to be taught is to recognize the individual with a disability as an individual first, not the disability or label. Kellen is not “Downs.” He is a delightful young man who happens to have Down syndrome and I can’t imagine him any other way.

Amanda: I think it starts by setting an example, whether that be at home, school, or church. To teach compassion, we have to be compassionate. To teach acceptance, we have to be accepting. To teach friendship, we have to be a friend. To teach love, we have to be loving. The only way to get over the fear and awkwardness is by integrating people of ALL abilities and disabilities into ALL areas of our life. Yes, it may take a little more time, effort, and planning to do this, but we will all reap the rewards of seeing the worth of all people. It needs to be the rule, not the exception. We have come a long way, but there is still a long road ahead.

How has being the parent of a child with a disability changed you and your view of the pro-life rhetoric?

Teri: I am more tolerant and less judgmental of others. My priorities are more balanced and my faith is much stronger. All life and all stages of life are to be valued and respected. We are ALL God’s children.

Amanda: After giving birth to a daughter who some might deem as ‘not worthy’ I am even more passionate about my pro-life stance. My daughter has brought more joy to our lives than I could EVER imagine. She is not what we expected, she is so much more! Every day I witness a miracle and time and time again am reminded that God does NOT make mistakes, he knows EXACTLY what he is doing. I am a better person because of my daughter and this world is a better place with her in it!

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In the end, we all agreed that it’s better to smile than stare, better to ask than ignore, better to be curious than to be afraid.  I know that my conversations with Teri and Amanda have greatly changed the way I interact with people with disabilities s and how I talk with my kids about it.  My hope is that their insights will help us all respect and enjoy each life more.

If you’re interested in further reading, Amanda recommends the blog Confessions of the Chromosomally Enhanced and Teri hopes everyone will read about and use People First Language.

Bonnie Engstrom

Bonnie Engstrom

Bonnie Engstrom is a cradle Catholic and stay-at-home mom. She married her dashing husband in 2006 and they now have five children: one in Heaven and four more wandering around their house, probably eating pretzels found under the couch. Bonnie lives in central Illinois and gets excited about baking, music, film adaptations of Jane Austen books, and the Chicago Bears. She was a cofounder of The Behold Conference and she blogs at A Knotted Life.

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