"Different, not less"

My father recently watched the Temple Grandin film starring Claire Danes and reminded me of the quote which titles this post. It's a great movie and I highly suggest watching it if you haven't already.

If people were to believe people with Down syndrome are in fact different, but not less than perhaps there would not be such a disparity in the amount of funding provided for DS research versus other conditions. Sadly, I am not shocked by this, but the truth is, until recently, I had not given it much thought. Please go read this post from a fellow blogger to learn more (click the excerpt below to read the whole post):

Ds researchers are able to come up with solutions to the issue of cognition, but they don't have the means. It overwhelms me to think that there could be a solution in just a few short years that will make a tremendous difference to Sammi. But without major Federal funding, this won't happen. We're so close.  It's a no-brainer, really. But why can't we get the backing we need to do this?

and please visit http://www.dsachieves.org/, join their mailing list, help to unite our scattered Ds organizations for the one cause we hold so near and dear to our hearts, making lives better for our children.

Thanks.

Comments

[maya]

That quote "Different, not less"--really spoke to me too. It just says it all, doesn't it?

I thought that was a great movie and hopefully it brought some understanding to a wider audience. I actually learned a ton from it about sensory stuff, especially.

[Jen]

We loved that movie, too. And that quote is one that we liked and have tucked in our back pocket for future use.

[starrlife]

That movie is great!I used that phrase for the title of My great Story! I think it sums it all up doesn't it? I'll have to check out your links. I think one of the dilemmas about research for DS is the idea of eliminating it vs understanding it ?

[Kate]

Hey Tricia,

I am 100% with you on the "different not less" thing and I think it is very important and awesome to spread the word about it, especially in the context of DS.

I am, however, really uncomfortable with the content of the post you linked to, where the woman compares research money for DS to research money for cystic fibrosis. Maybe she doesn't know enough about what cystic fibrosis is, but it is a fatal disease of the lungs. I believe, as I think you do, that, while DS can be very challenging for families and individuals, the whole point is that people with DS are people and should be valued and loved for who they are. Many advocates for DS say that it is not something that should or could be "cured."

I'm guessing that reason that there is more money for cystic fibrosis research is because it is a fatal disease, which is a really different thing. Knowing somebody who died from it, I'm just not sure it should be equated with DS in this way.

Just wanted to float that along.

[Tricia]

Kate, That is a great point and I am glad you made it. When I read that post and subsequently posted my own, I was doing so quickly due to lack of time, but I have to admit, the comparison did strike me  as well. I would not have been able to put into words why at the time, but it was lax of me not to acknowledge it.

I also know someone who died of CF, and I am friends with several people currently living with the disease. I can liken it to Multiple Sclerosis, which both my mother has and grandmother had,  as well.

So, yes, I agree that maybe it is difficult to compare those apples and bananas. Perhaps they are even more like apples and automobiles!

True also that a lot of people don't want to "cure" DS. I think I am one of those people! However there IS research that could be done that could potentially life better for those people who have DS. In my mind I am thinking about primarily how cognition can be addressed. While it is not fatal in the short term, it can without putting too fine a point on it, be, in a sense fatal to a well-lived and productive life. It doesn't HAVE to be, but if you truly think about the importance of being a contributing member to society and what that means in all facets of the idea, it is essentially that people be able to function. That is not to say people with DS cannot function--many many people can and do--but it is often with a lot of aide and assistance of their families and governnent agencies. Life is certainly not all about employment, but the employment rates of people with cognitive disabilities are DIRE.

 Also, the correlation between DS and early onset alzheimers is HUGE. Alzheimers IS, as I am sure you know, fatal in the entire population. In fact, there is reason to believe that if more research were done on people with DS, Alzheimers might be curable for the entire population.

Cancer is another area to examine. People with DS are more likely to get Leukemia, but MUCH LESS likely to develop other types of cancers. Again, this is something that could benefit people with DS and the typical population on the whole if more research dollars were spent here.

Some people in the DS community joke (though it's really not that funny) that alzheimer's and cancer are our key INTO more funds for research.

So yes, all that to say, I agree with you, it's hard to say this should get funded and that shouldn't (though I don't think that is what Rebecca was saying), nor can one really say this should get more or less without a lot of very deep thought. I think I allowed myself to ignore my hackles going up on that point because of the great disparity in the amount of funding used for DS research. I am not saying I am right, just saying. DS is the number one cause of mental retardation and the number one chromosomal anomaly. The only reason more people are not living with it is because 90+/-% of people carrying babies who have DS terminate their pregnanies.

I don't want to get overly dramatic or raise a point you certainly weren't touching on--one, I might add, that is ultimately gray even in my own mind--but at this rate, the "cure" for DS is early detection and termination largely throughout the US and elsewhere. If you think of it that way--and I am not saying one definitely should, but it's an interesting spin--DS in and of itself (without even considering possible health situations largely associated with DS like heart conditions, leukemia, GI diseases, etc) MAY be fatal.

Anyhow...this is a quick and dirty comment in response (that seems to be how I roll lately), but thanks so much for the thoughtful comment. It is definitely a good point and one to consider more. It has ME thinking! :)

T

[Tricia]

Kate, sounds like you (and I) are not the only ones who are concerned about the comparison to CF. Here is an interesting post, one that really illuminates things. Thanks again! T http://bridgets-light.blogspot.com/2011/02/downsyndrome-achieves-new-era-in.html

On Sat, Feb 26, 2011 at 4:21 PM, Tricia Theis Rogalski <ttr.freelance@gmail.com> wrote:

Kate, That is a great point and I am glad you made it. When I read that post and subsequently posted my own, I was doing so quickly due to lack of time, but I have to admit, the comparison did strike me  as well. I would not have been able to put into words why at the time, but it was lax of me not to acknowledge it.

I also know someone who died of CF, and I am friends with several people currently living with the disease. I can liken it to Multiple Sclerosis, which both my mother has and grandmother had,  as well.

So, yes, I agree that maybe it is difficult to compare those apples and bananas. Perhaps they are even more like apples and automobiles!

True also that a lot of people don't want to "cure" DS. I think I am one of those people! However there IS research that could be done that could potentially life better for those people who have DS. In my mind I am thinking about primarily how cognition can be addressed. While it is not fatal in the short term, it can without putting too fine a point on it, be, in a sense fatal to a well-lived and productive life. It doesn't HAVE to be, but if you truly think about the importance of being a contributing member to society and what that means in all facets of the idea, it is essentially that people be able to function. That is not to say people with DS cannot function--many many people can and do--but it is often with a lot of aide and assistance of their families and governnent agencies. Life is certainly not all about employment, but the employment rates of people with cognitive disabilities are DIRE.

 Also, the correlation between DS and early onset alzheimers is HUGE. Alzheimers IS, as I am sure you know, fatal in the entire population. In fact, there is reason to believe that if more research were done on people with DS, Alzheimers might be curable for the entire population.

Cancer is another area to examine. People with DS are more likely to get Leukemia, but MUCH LESS likely to develop other types of cancers. Again, this is something that could benefit people with DS and the typical population on the whole if more research dollars were spent here.

Some people in the DS community joke (though it's really not that funny) that alzheimer's and cancer are our key INTO more funds for research.

So yes, all that to say, I agree with you, it's hard to say this should get funded and that shouldn't (though I don't think that is what Rebecca was saying), nor can one really say this should get more or less without a lot of very deep thought. I think I allowed myself to ignore my hackles going up on that point because of the great disparity in the amount of funding used for DS research. I am not saying I am right, just saying. DS is the number one cause of mental retardation and the number one chromosomal anomaly. The only reason more people are not living with it is because 90+/-% of people carrying babies who have DS terminate their pregnanies.

I don't want to get overly dramatic or raise a point you certainly weren't touching on--one, I might add, that is ultimately gray even in my own mind--but at this rate, the "cure" for DS is early detection and termination largely throughout the US and elsewhere. If you think of it that way--and I am not saying one definitely should, but it's an interesting spin--DS in and of itself (without even considering possible health situations largely associated with DS like heart conditions, leukemia, GI diseases, etc) MAY be fatal.

Anyhow...this is a quick and dirty comment in response (that seems to be how I roll lately), but thanks so much for the thoughtful comment. It is definitely a good point and one to consider more. It has ME thinking! :)

T

[Becca]

I definitely did not mean to imply that CF is not deserving of research money - I just think that Ds needs *more* research money, but not necessarily at the expense of CF. I'm sorry that came across that way, but as someone posted above, the link to bridgets-light.blogspot.com makes that discussion so much clearer. My biggest concern for my daughter is the worry of early-onset Alzheimers. Both of my grandmothers have/had Alzheimers, and it's not pretty. Research will *certainly* shed light in this area...

[Tricia]

I figured you meant it that way, but it did make me hesitate for a moment, too. Glad you chimed in. Thanks! Love the discussion!

 

Alzheimers is a HUGE concern for me as well. My mother has early-onset dementia brought on by MS and while it is not the same thing as alzheimers, I see how it can destroy a person. I want to avoid that for all my loved ones at all costs!