“During times of universal deceit, telling the truth becomes a revolutionary act.” George Orwell


Saturday, January 19, 2008

"I used to have down's syndrome"

I frequently teach a class called "The Exceptional Child" class at CBU. The class is also referred to as the intro to special ed class.

In the early stages of the course, I like to bring friends of mine with intellectual disabilities to class to be both interviewed by me and also interviewed by the students. For example, this past week I brought four folks, divided the class into four groups, and cycled the class through a time of spending a half hour with each person. Typically students tell me they really enjoy the activity and also learn a lot.

In the couse of my intereviews of my friends, I always ask the question, "Do you have a disability?" Their response is often "No" or "I don't think so." Which is instructive to students demonstrating to them that disability is not necessarily the defining characteristic of a person's life. This past week, I received a very interesting response to that question from one of the women I brought.
I asked a woman who has down's syndrome, "Do you have a disability?"
"My friend has a disability" she replied. "My friend has down's
syndrome."
"Really" I answered. "I was wondering if you have a
disability."
She paused.
"I used to have down's syndrome" she replied.
"What was that like?"
"Well I don't remember too well."

I have known this woman for many years and she often says things that are very profound. I don't think she was trying to make some kind of a point but as I thought about her response it seemed very powerful to me. I can be treated like I am a particular way or I cannot be treated like I am a particular way. If I don't know someone with down's syndrome, I can treat them like they are strange, or different, or other. To them that might come to mean that they have down's syndrome. That is, if I have down's syndrome, people treat me like I am strange or different or other. However, if I am just a friend, I am treated as a known friend, and the same as everyone else. In that way it is kind of like I don't have down's syndrome anymore.

I am not saying that we pretend that people do not face challenges from their disabilities, or that they sometimes need some deferential treatment. This is not about denying a person has a disability. It is about treating a person like a person in the 95% of areas of life in which the disability is largely irrelevant. My woman friend with down's syndrome likes conversation and coffee, and working and going to church and dogs, and is concerned about her aged father and so on and so on. And she also has down's syndrome. This is not the greatest comparison, but I have bad knees. However, I can be in situations where my bad knees are always front and center or my bad knees are pretty much forgotten. In most of my daily life, you needn't remind me of them because they are irrelevant. There are aspects of disability that are like that, things about down's syndrome that are like that. I don't have to bring someone's down's syndrome front and center all the time. There are times when I might, but not very frequently in most of my interactions with people.

So my friends words were very encouaging to me. Perhaps her down's syndrome is not the focus of her life that it was when she was in school, or trying to get eligible for some services. At this point in her life, to her, she "used to have down's syndrome." Now she is just "a normal human adult" as she would say.

McNair

11 comments:

Julie said...

I was just thinking a few days ago about why I use people first language (using the term 'person with a disability' vs 'disabled person', etc.), and I had to be honest with myself. I use it less to offend people and more for myself because I am prone to seeing the disability first and sometimes only the disability. So, using people first languate helps ME see the person first, not his/her disability.

I also like the freedom your friend has to choose her own identity, how she identifies herself. To not be defined by others who believe she should be defined by only one of her attributes, in this case her disability. I think that's awesome that she sees herself as a normal human adult.

Afterall, she IS a normal human adult. All men and women with Down syndrome are. Too bad society doesn't understand that.

Anonymous said...

As the parent of a 10 year old daughter with Down Syndrome, I really liked what you wrote. Sounds very true to me.

Anonymous said...

Thanks for your insight. As the mother of a 5 year old with DS, I can say that I don't see the DS much anymore. I see her as my daughter, a typical kindergartener, a good sister, an excellent puzzle-doer, a kind friend, a pretty good reader (for 5), adorable, funny, motivated, active... I see all her strengths, personality traits, and talents before those areas where she is behind (ie. speech). She is unique and loved beyond words. The children in her regular Kindergarten see her as "her" and maybe "her" with a speech problem, but through their eyes, she is just who she is supposed to be and she has lots of friends. "People first language" is so important. Ds is a part of her chromosomal makeup, but does not define her. She is as unique and complex as all of us. And has been one of the greatest gifts in my life!

Julana said...

Another mom sent me this link. It's a thought-provoking idea. My son is ten. Maybe I will start telling people he was born with DS, but he grew out of it as he got older.

Stephanie said...

FINALLY someone gets it. I am a mother of a boy with DS. Since birth we have always looked at him as a boy first. He is just this kid who happens to have this syndrome. Because we view him this way, our friends and family have taken our Q and treat him like a person, not like a disabled person or person with a disability. I try to teach him he is not defined by this Syndrome. Yes it makes certain things different but he is not DS and DS is not him. Trying to get the general public to understand that people with disabilties aren't defined by that is a huge undertaking. Yes they have a disability, Yes, it may cause life to be a little more challenging in certain areas, but it isn't who they are. It isn't their essence, their soul. Thank you for showing us that.

Anonymous said...

I think that this is really an interesting way to look at things. Myself, I grew up with people who were disabled but I never looked at them like that. As you said, when their disability is not front and center in a situation (which many times it is not) then it is not the focus. On the other hand, it seems like some disabilities are always at the forefront though God has recently given me the opportunity to see that they are not. I think a person who has down syndrome would be a person whose disability was always at the forefront. The reason I had assumed this is that it affects your thinking and understanding which I feel are two of the essentials for living a full life. When I read about your friend, I thought it was so interesting that she feels that she no longer has a disability. I also read your newest posting about the person with glasses and I began to realize how a person without disabilities will look at another and think that they would not be able to live with that personality. I always had this view, but I think that this is really a common and pervasive perspective. I think that most people would look at a disability in the way that they can’t imagine having some part of themselves all of a sudden impaired rather than looking at it like a person was born that way and doesn’t know anything else. It seems that people with disabilities are actually just like us after all. The one thing that I am still struggling with is how a person with disabilities fits into our culture. Clearly they are made to seem as if they don’t, but there should be a place for them. The thing that I am really struggling with is that though I don’t believe that disabled people should be segregated, I don’t necessarily belive that they should be allowed to disrupt society either. If a person can display appropriate social behavior, then it is reasonable to allow them to participate, but I don’t think that someone’s going out to a movie or a restaurant or any other place should have their day ruined because someone feels that a person should be included. I guess ultimately I am referring to people that have mental retardation or something else that disrupts their brain functioning. If a person is blind or deaf or has a physical disability, I think those people should all be included but anyone who is disruptive should not.

Julie said...

Anonymous,

Thank you for responding and sharing your thoughts about what you used to believe regarding people with disabilities, what you do believe, and what you are learning.

I'd like to respond to your comments about disruption, not necessarily dircted at you, but to share my thoughts based on my own experience as one who has taken individuals with the kind of cognitive disabilities you've mentioned, such as Down syndrome, out in public.

The term and the idea of 'disruption' is subject. What may be disruptive to one person may not be so to another. Who decides what's acceptable and what's not?

There are general rules that the managment of establishments such as movie theaters and restraunts follow that make the determination of whether or not to refuse service to one behaving disruptivly. They and the law, certainly, if a 'disruptive' person is breaking the law, should determine whether or not someone should be 'allowed' to remain in the establishment. These laws and rules should be general for everyone, both for people who have and do not have cognitive disabilities. In fact, legally speaking, there is no difference between the two 'kinds' of people.

The determination of 'disruption' should not be based on wheter or not the person accused of disruption talks too loudly, laughs too loudly, cries, grunts, rocks too much in his/her seat, etc. The determination of 'disruption' should not be based on the fact that other consumers of the establishment may feel 'uncomfortable' with a person with cerebral palsy sitting near by. (NOT that I am accusing you, Anonymous, of thinking this way.)

Sometimes in bringing my friends with me out in public, they do dispaly disruptive behaviors, such as verbal or physical aggression. Most often, though, when providing appropriate behavior managment techniques, I am able to assist them in regaining control of themsleves and we continue with our activity. When I am not able to assist them in that way, my friend and I always leave the store, restraunt, movie theater, etc.

In those situations, I am always grateful for other customers who notice us and who allow us to work through the situation, despite having added a bit of excitement to their grocery store trip. Surely, those other customers have every right to complain to management, and the managers have every right to ask us to leave. But the irony is, that for people who are concrete and literal thinkers, such as those with cognitive disabilities, in order to learn appropriate social 'norms', such as how to behave out in publice, they have to BE out in public.

The idea of inclusion is not about infrining on the rights of average people, but rather incuding people with disabilities in average things. Which IS their right.

bethany said...

anonymous,

i recently wrote a 20 page paper for my phd applications about this idea of "disruption" and people with developmental disabilities--specifically in the context of Christian communities and church services. if you'd be interested, i'd love to send it to you and to hear your thoughts on some of the ideas in it. please send me an email to mcbethany at gmail dot com if you're interested.

blessings.

The Editor in Chief said...

Bethany,
Please do send me your paper! I would love to read what you found. You can email it to me at jmcnair@calbaptist.edu or mail it to me at

School of Education
California Baptist University
8432 Magnolia Ave.
Riverside,CA 92504

I look forward to reading your paper.
McNair

Anonymous said...

I am in your Exceptional Child class at CBU and I remember you telling the class this story about your conversation with your friend. I personally loved the fact that she does not define herself as a person with Down’s syndrome. She stated that she used to have it, but not anymore. I read the other posts and I completely agree with the fact that a person should not be defined by his or her disability. Once you know a person, you forget all of their flaws and see them for their personality and who they are. It is the same with a person who has DS or another disability. You become friends with this person and the disability goes away. Your friend said she does not remember having DS. She knows she was once a person with this syndrome and that others may define her by this, but now she sees herself as just another person which is awesome. You may meet a person with a disability and notice it before anything else, but it should not affect the way in which they are treated or the way they are thought of. Just like your friend said, she is a “normal human adult”.

Alyssa P. said...

After spending some time with four adults with intellectual disabilities that Jeff brought to class, I have had a revalation. It is time to stop saying "Oh poor things, what a sad life they live" and realize that these beautiful people are joyous, innocent gifts from God. SAnd why must we stigmatize people with intellectual disabilities as "they" - a group separate from the norm, the hip, the regular...These people are no different from you and I in terms of working, going to school, having hobbies and desires. In fact, I think we could possibly learn more from them than they could ever learn from us. We should yearn to have their fervor about life, their love for people, and ultimately, their faith! I enjoyed Jeff's posting about this woman who said "I used to have down's syndrome." To this woman, whether she has a disability or not is irrelevant, or secondary at most. She is first a child of the Lord, a daughter, a woman who enjoys life and all that it has to offer! I have learned that Children and adults with intellectual disabilities simply may have some special needs, but that they certainly do not live "sad" lives that should be pitied. They are happy and proud to be who they are. Just as any of us who have lived our entire lives being shorter or taller or smaller or larger than someone else, we do not know what it would be like to be any different and we certainly do not let it stop us from living! As Christians, we claim we desire to be Christ-like, so then why do we shut these people out from functioning normally in church? Why must they be separated and segregated from the rest of the congregation? Haven't we learned that every person in this world, whether disabled, whether rich or poor, whether harsh tempered, whether fat or ugly, is an indispensable and necessary part in making the body of Christ whole??