In the past 40 years, since we stopped institutionalizing persons with Down's and started educating them, they live on the average 30 years longer than they used to, and they have on the average increased their IQs by 20 percent because we started allowing persons with Down's into the public schools. Those are marvelous strides, and I think the 'just like us' strategy has worked well to bring this about.
In other ways NOT just like us. My daughter likes to shock her professors in college by saying stuff like "I can't meet then. I have to go home and get my 17 year old brother off the school bus". She enjoys the funny looks she gets, and she milks the awkward pause for all it's worth before explaining the situation. Once explained, the professor understands. A person with an IQ somewhere between 40 and 65 is not 'just like the rest of us'. It is a person who can learn to live with support. It is a person--in the case of my son--who does not have the judgment to get off the bus, walk home, and stay at home alone. It is a person who should be respected and loved, but it is also a person who needs a guardian, who needs to be protected for his own good, physically, emotionally, financially, etc. And that is precisely why persons with Down's are 'not exactly like us in all respects'.
However, whenever we self-consciously try to convince ourselves that these persons with Down's are 'just like us', the effort we have to muster to be convincing is the proof that they are NOT 'just like us' in all respects. If they were, nobody would need any convincing.
Chromosomally, persons with Down syndrome have an extra chromosome on pair 21. In short, it is a miracle in a lot of respects that persons who have Down Syndrome live and function and are as normal as they are, given that in every heart cell, in every kidney cell, in every skin cell, indeed in every single hair on their heads, their genetic make up is different from that of typical human beings. They have 47 chromosomes in every cell, and typical human beings have only 46. Down syndrome is genetically amazing! Or at least, it is amazing that you can have that much genetic material present without having more differences between those with 46 and those with 47.
But before I get carried away with the scientific wonder of the situation, let's get back to the topic "just like us". I do want to minimize the differences in terms of people's humanity and people's rights to be treated equitably, and I do want to help stop discrimination against Down syndrome whenever possible, so I don't want to highlight the differences with the aim of making discrimination worse.
What I will say though is that there are enough differences that it is a task to raise a kid with Down's, and even when they are adults, they still need supervision and 'raising' where regular kids do not.
I have 4 children who are now all adults. One has Down Syndrome, the other three do not. The three without Down's each have close to triple or more the IQ points that the person with Down's has. At 18, all three kids without Down's were capable of moving out, driving cars, getting jobs, and going to college. The kid with Down's is not.
Clearly there are differences, and I think the current 'campaign' of showing the sameness, in some respects make society blind to the needs of parents of kids with Down's as well as those kids themselves as they grow. There are HUGE adult needs for persons with Down's, and when we play this 'just like us' game, we shoot ourselves in the foot, minimize the needs, and do not get the political clout and attention to deal with the issues that need to be brought to the forefront.
One comment I read was that a mother said she thought it was nothing to raise her 7 year old with Downs. After all, she had a teenage daughter who was much worse. Well, let me mourn with the mother who has the difficult teen daughter, since I have been blessed with teens that did not give me trouble. But let me also assure her that as her 7 year old with Down's grows into teen and adulthood, she will have many more issues to deal with IN EVERY RESPECT for her offspring with Downs--- many more problems than the average teenager will ever give her on her worst day. After all, you don't have to find a sitter for most 18 year olds when you want to go out for the evening.
Another aspect of normalizing Down's that bothers me is that those pictures we see in magazines and books--in typical western world style--are almost always of the prettiest persons with Down's and most often they are pictures of very young kids with Downs. (The same way that we rarely see ugly or old women as news anchors in this country). I just prefer pictures of real people -- all people -- not fashion models. All people are in essence beautiful for their humanity, so why do pictures in the media usually sport the young, the slim, the pretty? Truth is that most adolescents with Down syndrome are obese and struggle with their complexion. We hardly ever see obese persons on those poster-style pictures. It would be good to simply capture people as they really are rather than cater to our media-developed craving for 'beautiful people'. My son with Down's has an uneven face and he also has cleft lip and palate, hearing aids, and eye alignment issues. I still think he is beautiful, but not fashion - model beautiful.
I will end with this blog, written by a mother of a child with special needs. I thought of it in light of 'not exactly just like us'... she has 10 reasons why she hates being a special needs mother and trust me, she is spot on with each one. Days like hers are not your typical mom's days. http://insidiousglamour.hubpages.com/hub/Top-Ten-Reasons-Why-I-Hate-Being-a-Special-Needs-Mother
My mantra on some days when I have had enough is "I SO did not sign up for this." Yes, most days are a blessing, but even the days that are a blessing are a different sort of day, a different sort of work, a life most people don't live: flossing the braces on the teeth of your 18 year old, shaving your 18 year old, checking his underwear and sending him back to his room because he is wearing 4 pair on top of each other under his jeans (don't ask me, I have no idea why), checking his backpack before he leaves the house to make sure he didn't take something from someone's room, checking his wallet that he did not take any extra money from someone, reminding him to be good and not grumpy. Checking feet for blisters from the leg supports at night, rehearsing every morning how his day will go, so he is not surprised and goes into uncooperative mode because he did not expect the new thing he does not want to do, securing a sitter for night meetings at work, scheduling and attending 2-4 doctor's appointments per month. Hooking your kid up to Oxygen at night... explaining YET to another person at church what your child is capable of, and why he does not behave as that particular individual would like him to, etc.
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