"...although it would be delightful, it is not possible for the culture to make up for the society." - Fran Lebowitz

I was watching Real Time with Bill Maher, tonight and almost turned it off because Seth McFarlane was going to be on.  Though, I agree with him often politically, the seemingly bottomless well of ignorance and hate he spews towards the intellectually disabled is hard to ignore.  As my worldview has been colored by Down syndrome for 18 years, it’s hard to get past.

Long story short, I stayed for Fran Lebowitz.

The quote that is the title of this little diatribe is one that she spoke in response to a question about the Oscars being “too white”.  She didn’t say much during the show, but that quote, "...although it would be delightful, it is not possible for the culture to make up for the society.", was a gem.

And I agree.  

It would be nice if having more black Oscar winners meant racial tolerance, but it doesn’t, in the same way that having a kid with Down syndrome crowned prom king does nothing in the grand scheme of things for kids with i/d that are more often than not, excluded.

I can see people who think Betsy DeVos is going to be a dandy Secretary of Education screaming “Well, what more do you want?!?!???  I mean, HE. WAS. PROM. KING.  Forget that there are hundreds of hours in the school year where he is separated from the “typical” population.  Forget that he is in danger of losing even the shitty supports that are in place at the moment.  Forget that people fear the unknown, and in too many schools, kids with Down syndrome are not known as friends and peers, still, today.

I have some very lovely snapshots of my son and a couple of “typical” kids.  If I posted those pictures without comment, you would think that these are his close friends.  They are not.

He spends hours texting and calling and leaving barely intelligible messages on their voicemails, and rarely, very rarely does he ever get a call or text back.  About once a month, one of these boys comes over for a half and hour or an hour at most.  He NEVER gets invited to their house.  It is heartbreaking to have your kid tell you about a party that he wasn’t invited to, or who is sleeping over whose house.  He wants it so badly to be him.  He wants SO BADLY to be one of the guys.  

I’m not bashing the kids.  They are good kids.  They are nice to my kid and have fun with him when they are here.  I honestly think they don’t mean to exclude him.  They just don’t think to INCLUDE him.  They don’t see him as an equal, and that is the most heartbreaking part.

I don’t expect the world to be color or gender or orientation or disability blind.  Not seeing differences is impossible and dishonest.  Not seeing those who are different than you as peers, is a tragedy.  Before we can have equality, we must see each other for the equals we are.

I am pulling for La La Land, but have not seen Hidden Figures, yet.  I guess I need to get on that this weekend.

My Reaction to the Article "The Preventable Death of Ethan Saylor" by Stephen Greenspan, Ph.D.

Here is the link so you can read it for yourself.

It has been shared many times since it came out last week.  I've seen it on national Down syndrome groups pages and on some friends', as well.  All I can wonder is:  why?  Are we so starved for press in the I/D community that we will cling to any scrap that blows our way?

Let me take a step back.  I am glad that the horrific, tragic, TOTALLY PREVENTABLE death of Ethan Saylor is getting more and more press.  I am glad it has not gone away.  I am glad that others have taken some of the pressure off his family for getting their story told; but this?  This is more victim blaming and there has been plenty of that, already.  It is a clinical summation made up of sketchy details and inferences.  

The reference to Ethan's IQ makes me want to climb through cyber space and throttle this guy.  Who cares what his IQ was?  For one thing, IQ tests for people with Down syndrome are not terribly accurate, especially when the tests were done years ago.  And even if 40 IS an accurate IQ, who cares? Seriously?  Is there in IQ threshold for watching movies?  If so, what is it?  Is no other measure taken into consideration?  

"I would have thought such a movie beyond the comprehension level of someone with Ethan’s IQ level, but presumably he enjoyed the non-stop nature of the action."  says Dr. Greenspan.   

Again, seriously?  Dr. Greenspan, with his many, many years of research and writing about intellectual disability should know very well that typically, a person with Down syndrome's receptive intelligence is much, much stronger than their ability to demonstrate their knowledge.  So, just because Ethan would not necessarily be able to talk at great length about what it was he found so fascinating about the movie, he did enjoy it and he would have been able to discuss it on some level if events had not unfolded the way they had.  Truthfully, none of that matters.  It's none of the doctor's business why Ethan saw that particular movie.  

Dr. Greenspan also writes about Ethan's weight being a factor in his death. This is pure nonsense.  Anyone who has a crushed larynx will die from it without immediate medical attention; period.  You cannot breathe when your airway is blocked, whatever your weight.  

Dr.  Greenspan blames Ethan for lashing out at the police officers.  These officers WERE NOT IN UNIFORM!  If they had been, maybe things would have been different.  The officers were moonlighting as security guards.  How was Ethan to know that they were really cops?  He was trying to get more money, via his phone, for another ticket.  In Ethan's mind, he was complying with the request that he purchase another ticket.  Whether that was logical or not, is beside the point.  In the few minutes the officers and management could have waited, without harming Ethan, his mom would have arrived, he could have had a new ticket, or he could have left.  They refused to give him the opportunity to make the situation right.  I find that indefensible.  

Even without all of that, even if the officers were uniformed and Ethan was hitting and kicking (which I have not read that he was), what does it imply?  That feeling threatened (with good reason, apparently) is a crime punishable by death?  I know, I know, they didn't MEAN to kill him; but they did.

"Whatever the tolerance level that police departments have for using potentially deadly force (and apparently the tolerance level is fairly high in the Frederick County Sherrif’s department), one would like to think that are other departments and officers, including within the Frederick department, who would view the behavior of the three officers in this case as unprofessional. It was unprofessional because police officers, along with other professionals (such as therapists), are paid to accept a certain amount of abuse without responding in kind. They are also being paid to recognize when a subject is in an unstable state, and to practice responses intended to calm rather than inflame. Unfortunately, neither of those hallmarks of professionalism were demonstrated in this case."  (emphasis mine).

I definitely think he has a point there.

The last part of the article gets to the heart of the matter, but doesn't tell us HOW to change things.  We certainly need the how.

 If there is any lesson to be learned from this tragic case, it is that the first instinct of first responders, as well as direct care staff, when dealing with immature behavior exhibited by brain-impaired people like Ethan Saylor, is tolerance combined with gentle insistence involving negotiation, both done in a spirit of love and attempt to understand the individual and help him or her to regain self-control.

On the last point, the doctor and I agree, but until we, as a society, have a better level of tolerance towards different communication styles, appearances and abilities, things like this will continue to occur.  We blame IQ, or cognition, when really what is to blame is prejudice and intolerance for difference.  How do we change minds when it comes to those with intellectual differences?  When will this population be recognized as having equal rights under the law, when time and time again, we are shown that the rules are applied differently when you have a disability as seen here and here?    

I realize that some will see this post as trying to have it both ways.  Maybe I am, but I don't think so.  I don't think it is wrong to suggest that waiting a few extra seconds before you decide to "subdue" someone when you SEE they have an obvious disability is unfair to the "typical" population.  I think it is compassionate.  

I am sure that Dr. Greenspan means well.  I'm just not sure that his post has helped the cause of getting justice for Ethan.

Why the R-Word Sucks with guest blogger, Nidhip Mehta

This post is a culmination of spending years trying to convey my feelings.  You can read this year's r-word campaign posts here and here.  I have written at least 427 other posts on the subject over the last 14+ years, but I will spare you those.  This latest post came from hearing about Kat Von D and her lipstick line at Sephora.  Long story short, they collectively decided that naming a lipstick "Celebutard" was a hilarious idea.  

Celebutard - from the Urban Dictionary:  

A famous stupid person. Typically refers to the current crop of vapid celebrities.

Similar, but not exactly the same as Celebutante: 

A person of high society and wealth whose famous just for the fact of being rich and fabulous. A socialite who is "famous for being famous."

It seems that no one spotted the irony of a tattoo artist who is famous for having a reality show and for sleeping with Sandra Bullock's ex calling anyone out for being vapid, or famous for being famous.  But, whatever. You can read more about that here.  

Once the disability community got wind of it, it took about 24 hours of tweeting, sharing and public shaming to get Sephora to stop selling the offensively named shade.  It was a victory, but a hollow one.  I am glad that as a community we were able to mobilize and have our voices heard.  I am troubled by the fact that it's a battle we have to keep waging.  

Here's another great post from a friend, here.

In the midst of the fracas, a good friend of mine, Nidhip, decided to play Devil's advocate.  He posed a few, well thought out questions asking why the r-word is so offensive.  He got quite an eye/ear full from me on the subject. We had a little back and forth with no real resolution, just a lot of anger, hurt and frustration on my side.  Again, I was getting nowhere and with someone who liked me and actually cared about my feelings!  How was I ever going to get the point across to anyone else?  

I went to bed fuming and in the morning I realized that getting upset was getting me exactly nowhere.  To top it all off, I was going to quite possibly lose an old friend in the process.  I did a little soul searching and then I wrote a note to Nidhip that said:  

Hey. good morning! First of all, thanks for getting me so riled up last night, it made me really think about things. Second, sorry about telling you to get off your high horse. I have an equally tall one and don't like to have it pointed out to me. Anyway, I was thinking that this conversation is a good one. I want people to understand where I am coming from, but it is very hard if you are not in the same situation. It's frustrating, to say the least. From the outside, you might see it as a debate over a word (which, in the scheme of things, seems inconsequential) but for me and many others, it's a fight for inclusion, for dignity, for justice and for civil and human rights. The word merely is a reminder of how far we still need to go in these areas.

I'd really like to write some more about it. I know I won't convince everyone, or maybe even you, but I would like to try and engage in healthy debate. As you can tell, debate is not easy for me. Arguing is fine if I don't truly care about the answer, but when I do...oh boy. I am all emotion. I know logically that a word should not hold so much weight, but emotionally, it does, it really does.

I'd like to try and work through this some more. Would you be okay with me putting your questions in a blog post and answering them? Or would you want to write something different? Or go back and forth? I think it could be a really good thing. If you don't want to add anymore, I understand, but if you would allow me to use your questions, I'd be grateful. Think about it.

And being the good guy that he is, he said this:

Hey, first of all, I just want to say I'm sorry again. I know with hindsight, you're thanking me, but I really should've gauged the situation better before opening up something which clearly has an emotional resonance. You're right, I tried to intellectualize something which, at its heart, is emotional. But I honestly think that it helps to do that when you're trying to create awareness or change minds. Which is why I was getting at you for simply saying that it shouldn't happen because it makes people angry. As you know, progressive thinkers like us do a lot of things that make other people angry, but that shouldn't stop us from doing it. Like wanting that anybody can marry anybody else, regardless of what the Bible says. That sure makes a ton of people angry, but I'm gonna go on wanting it.

Anyway, like I said last night, my questions came from a point of inquiry, not argument. I genuinely wanted to hear your point of view and well... I got it, I guess.

Sure, I'd be okay with my questions in your blog... after all, that was my point in bringing it up... to initiate discussion. But I really don't want to get anyone upset, let alone you. You are a great person and I admire you a great deal, but I want to respect your limits and tolerance as well.

And thanks for reaching out to me this morning. I really felt bad about upsetting you and regretted bringing it up. I admire that you're willing to put that aside and engage me again. That says a lot about you.

So, here is Nidhip's query. I will break it into parts in order to address different pieces of the issue; but first, here it is in it's entirety:

Ok, so my question is essentially this:

I sympathize with the feeling of being offended by a word or phrase. Ever since I learned that the R-word is offensive to some (particularly to those who have family members that are intellectually disabled), I stopped using it. I don't even use it when those people are not around, and I try to remind others when they use it. Also, I understand the negative connotation when the word is used to describe someone with Downs Syndrome or autism spectrum. It's really not appropriate, and it's not such a big thing to simply use another word.

What I don't completely understand is when the word is used outside of that context; when the intent has been changed from the original meaning. This happens in language. It happened with the words "moron" or "idiot" or "stupid", which were all used at one point as clinical descriptions of people with intellectual disabilities. These days, no one bats an eye or hesitates to use these words. Heck, even people who have family or friends with intellectual disabilities use these words, which a century ago had the same meaning and connotation as the R-word.

Is it not possible to divorce the word from its meaning? Can the perception of those who use the word be more nuanced? Shouldn't there be a distinction between those who use the word offensively and those who do not mean offense?

I'm not exactly saying that people should simply ignore it when people use the R-word, but that perhaps they should react in accordance with the intent in which the word was used, and not simply react from pure emotion.

I also think that in order to make people better understand why they should not use the R-word, the reason given should be more than "it makes me angry" or "you'll never understand unless it happens to you". I think these don't help the cause, primarily because unless the person involved is a friend or relative, no one really cares whether something they say makes some anonymous person angry. I believe in many things that make people angry, like feeling that gays should be able to marry or that all people should have access to affordable (or free) health care. The fact that this makes some people angry does not bother me in the least; it's a fundamental disagreement. So, I guess that in order to better understand the issue, I'd prefer to see a more intellectual rationalization for not using the word, as opposed to an emotional one.

Of course, what I prefer doesn't always matter. There may not be, after all, an intellectual rationalization. Maybe it should suffice that enough people (whatever that critical mass is) find it offensive. But the intellectual part of me wants to know where to draw the line, because it seems very fuzzy and, to be honest, hypocritical. Especially when I see the words "moron" and "stupid" being used all the time. I don't know, perhaps it simply has to do with the amount time that passes for a word to fully change its meaning. It's difficult to parse, unfortunately.

Again, I want to reiterate that if the word offends people who I like and admire and want to stay friends with, that's good enough for me. But it may not be good enough for everyone.

My response: 

I think there are essentially three parts to this:

1. Is it not possible to divorce the word from its meaning, in the way idiot and moron have lost their original clinical meanings?
2. Shouldn't there be a distinction between those who use the word offensively and those who do not mean offense?
3. Is there a way to intellectually rationalize why it is wrong?

Is it not possible to divorce the word from its meaning, in the way idiot and moron have lost their original clinical meanings?

First, some people are bothered by the words idiot and moron and imbecile because of their historical significance to people with intellectual disabilities. For myself, I feel that those words have evolved to a point that when someone says any one of them, a picture of a kid like mine does not pop into their heads. I haven't seen any offensive memes using a picture of a kid with Down syndrome and the word "idiot"; but I have seen plenty with the word "retard". That makes them different, as far as I'm concerned. Maybe it's the role of social media that makes this word different (for me) from the rest. It certainly plays a part.

Secondly, I don't wish to drag up every old word used in reference to people with i/d. I feel they have run their course, history has moved on and so should we. The difference with "retard" is that it IS in common use these days and because of that, it keeps anyone who could be called "retarded" by a doctor (even though it is going away in the medical field) apart from everyone else. It makes them the "other", not like us, not worth worrying about offending, maybe, not even quite human.

Thirdly, though I could wait for this word to become innocuous, I don't want to. I want to stand up now and say that it matters to me and it matters to my family and many, many families like mine.  Why should my kid, who has been called a retard more times than I can count, have to hear that word in any form (including added "tard" to the end of other words)?  

Shouldn't there be a distinction between those who use the word offensively and those who do not mean offense?
Why should the offender (even if it was not meant to offend) get away with impunity?  I see it as a matter of simple humanity.  Most people don't want to hurt people's feelings, even people they don't know.  I think educating those who truly don't realize that their words are hurtful is important.  It's not about getting angry (Nidhip:  you seem to only see my anger and not my hurt.  I'm wondering why?), though I do get angry about it.  When someone uses the word "retard" and I am in earshot, more often than not, I use it as a teachable moment.  I avoid calling people out in public unless they are being blatantly disrespectful, but I typically pull them aside later on and say something to the effect of "this is a hurtful word, I know you didn't mean it to be, but it is" and nine times out of ten, they are apologetic.  Some (many) still use the word, but at least I have planted the seed.  If they hear my voice in their heads the next time they say it, it might not feel as satisfying and hopefully, they will re-think it.

The reason I brought up being hurt versus being angry is that it is much easier (I think) to dismiss anger than it is to dismiss hurt.  People get angry for all sorts of reasons (as Nidhip brought up) that I don't agree with.  Frankly, I think much of their anger is misplaced.  But hurt?  I don't want to hurt people or be hurt.  Knowing that the r-word can be hurtful should be enough.

While there is a difference between being deliberately hurtful (Hey, Retard!) and being unintentionally hurtful (That's so retarded!), the word still hurts.  It is associated with being bad, stupid, ugly and foolish AND it may be a part of a doctor's report; therefore making it a part of a person with a diagnosis.  Would you want any part of what makes you YOU be a slur? 

Is there a way to intellectually rationalize why it is wrong?

I've said that to disability advocates, this is the N-word. Do we use the N-word in any form?  No.  Because most reasonable people get that any form of it is degrading and wrong.  They wouldn't dream of saying "oh my god, you are such a nigger" to a friend who's acting silly.  But, "you're such a retard"  is fine.  Why?  What is the difference?  

The only difference I see is that blacks have had (and in many cases, still need) their civil rights movement, while the civil rights movement for the disabled is still in it's infancy.  You would be horrified if a school refused to accept a child because they were black today; but every day, schools refuse to accept children who learn differently, many without even giving them the chance to show that they can adapt in a mainstream classroom.

This happens today.  

Yes, kids with i/d learn differently than other kids.  And typical kids learn differently from each other.  With creativity, love and support, everyone wins and everyone learns more.  There is no excuse to leave some kids behind for any reason, whether it is sex (in some parts of the world, girls are still under-educated), race (hello?  American south in the 1960's?), or ability (today, all over the world).

My intellectual rationalization would be that the r-word keeps people with intellectual disabilities separate from the rest of society the same way the n-word kept black people separated from society.  Both words say "you are different, you are not worthy, you are not accepted".  If you look at the history of the civil rights movement, you will see that many of the things that were done to black people are still being done to those with developmental disabilities.  The only real difference is that not many have yet noticed that the disabled, as a group, are calling for their rights as human beings to be recognized.  Like African American, women and gay people before them, people with disabilities are calling for equal treatment.  Eliminating slurs against them must be a part of that movement.

Reality vs Possibility

About a month ago, I had a disappointing but eye opening conversation. 

(I'm going to apologize for being somewhat vague in this post, but hopefully, you'll realize why)

You know those surveys that you are sometimes asked to take?  You know, the ones that are supposed to help businesses improve?  I'm sure you do.

The place I had been working asked us to do the same thing periodically.  I never found them in depth enough to really convey what I thought.  So, I eventually brought my ideas for improvement to a supervisor.

I sent an email and never heard back.  Then I sent another and had the same experience.  After the third email and several weeks went by, I forwarded them to her supervisor.  I wasn't trying to start trouble, really.  I felt I gave the first person more than ample time to respond and when she didn't, I moved on; plain and simple.

I feel very strongly that what I do is important.  I love working with the intellectually disabled population and since I have three boys of differing abilities, I see it as absolutely imperative that progress be made in this arena.

I didn't feel that my ideas were particularly radical.  What I was asking for was basically a pathway to full inclusion in recreation.  After all, it is what most people want for their children and it has to be the way of the future.  Segregation, even within a great model, is still segregation.  

I was taken aback, to say the least, when this person I was counting on to help me take us in this direction berated me for a full thirty minutes on the phone.  How dare I question the way things were done?  How dare I dispute their greatness?  Did I not know that we were the model for "How Things Were Done?"

I may have, at this point said that if we were the model, then that was pretty sad.  I might have.  Ok, I did say that, verbatim.  Yes, I was talking to someone who could have fired me on the spot.  I may have even hung up the phone and had her call me back.  Ok, that happened too; I'm not proud of it.  But, let's face it; I was pissed.  

How dare she tell me that there was no room for improvement?  How dare she say that there are some people who want segregation?  For real?  Like, really?  Forever and ever amen?  What?!?!?

How do we get the general population to see our citizens with intellectual disabilities as anything more than a burden, a waste of resources (read:  money) as HUMAN BEINGS if they are continually separated from the rest of us?  

And it's taken me a full month to realize that if this is the best that this group can do; then it is time to move on.  I am not ready to settle for the "best".  The best the disabled have right now SUCKS.

I am ready for a new direction, with like minded individuals.  I am ready to break a new trail towards full acceptance and inclusion for my children and for all the children that come after them.

I am exasperated by those who have been on the back of the bus for so long, that they forget they are even on a bus.  Don't you want more, goddamnit?  I know I do.

Guest Blog on Behalf of Stacey Calcano and T21 Brigade

I am honored to be a part of a tiny, but mighty group of determined advocates for people with Down syndrome.  ~ Amy

Wednesday, May 29, 2013

Open Letter to the National Down Syndrome Society (NDSS)

NDSS began the Buddy Walk in 1995 to spread its mission of promoting the "value, acceptance and inclusion of people with Down syndrome at the local level." In 2012, nearly 300,000 people participated in a Buddy Walk across the United States, and over $11 million was raised in the process. Local affiliates are expected (and contractually obliged) to give a certain percentage of earnings to the NDSS, as payment for utilizing the Buddy Walk name (trademarked) and framework.  Ethan Saylor, a young man with Down syndrome, died at the hands of sheriff's deputies in Maryland after refusing to leave a movie theater in January of this year, and NDSS ("The National Advocate for People with Down Syndrome Since 1979") has been criticized for its lackluster response in the aftermath of his homicide.  NDSS would like to separate the "joys of the Buddy Walk" from the "Ethan Saylor tragedy," while advocates for Down syndrome all over the world are left questioning the commitment of the NDSS to its mission. The Buddy Walk is the largest fundraiser for the NDSS. 

May 29, 2013

An Open Letter to the National Down Syndrome Society

(Why My Family Won't be Participating in This Year's Buddy Walk)

Last year, my family raised nearly $10,000 for our local Down syndrome group's Buddy Walk (our fundraising effort was so large that I was recently contacted to help field test this year’s newly improved Buddy Walk website).  Unfortunately, I cannot in good conscience participate in this year's Buddy Walk efforts after your failure to meaningfully advocate for justice in the aftermath of Ethan Saylor's homicide.

Two years ago when our family received news we would have a child with Down syndrome, I turned to you, the National Down Syndrome Society, for guidance and assurance.

Your mission statement served as a beacon of hope in a time full of unknowns:

The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.

We were inspired by this message—and by our young son with Down syndrome—and became very involved in our local Down syndrome community.  We began revving up the troops for our first ever Buddy Walk. The 2012 Buddy Walk was our first experience as part of a much larger community.  We raised so much money that I received a gold star in recognition of my fundraising efforts. I thought, “A gold star!  I got a gold star for Carter!” The day was magical, and everything I'd hoped it would be.

The faith I had in your organization quickly faded in the wake of your late and limited response to Ethan Saylor’s homicide, a true test of your commitment to your advocacy on behalf of those with Down syndrome.  When I learned of Ethan's death, I wanted desperately to contribute in any small way I could to help his family find justice.  I knew that would not happen without an independent investigation into his death, and assumed the NDSS would take a leadership role to ensure this case got the attention and outcome the Saylor’s deserve.  Sadly, the NDSS response was not only deplorably late, but efforts to secure an independent investigation for the Saylor family were absent or minimal. 

The first statement released by F.R.I.E.N.D.S (and supported by NDSS) did not come until six weeks after Ethan's death, and emphasized that F.R.I.E.N.D.S are “strong supporters of the Frederick County Sheriff’s Office.”  Subsequent statements by NDSS stated that the organization was “determined to see to it that necessary and comprehensive actions are implemented to ensure tragedies like this never happen again,” but this determination came at the cost of any effort to secure an independent investigation.  In addition, later press releases had erroneous information, called for no action from the Ds community (asking the community to please not attempt to contact the Department of Justice) and failed to adhere to a language of inclusion and respect I would expect from such a large, respected advocacy group.

Recently, it has come to light that Ethan suffered unexplained injuries before his death (a crushed larynx, suggesting the use of force), yet there have been no new or renewed calls for justice and an independent investigation.

I enjoy reading the “My Great Story” pieces on the NDSS website, but not all stories about individuals with Down syndrome are “feel good stories" or have happy endings. Does that make them less deserving of coverage from our national organizations and national news organizations? I would argue these stories are more important, and where our collective attention should be focused.  We should all focus on righting the wrongs that befall people with intellectual disabilities every single day. Certainly the homicide of a young man with Down syndrome, who went to the movies and died while crying out for his mother, deserves our attention.

Last week, I received an email from the NDSS asking my help in beta-testing the newly improved Buddy Walk site for this year. In response, I wrote:

“Thank you for including me on this distribution. However, I am very conflicted about participating in this year's walk. I am very disappointed in the way the NDSS and the NDSC has handled the Ethan Saylor tragedy. There has been no community mobilization around the death of this young man. The silence of our national organizations is so disappointing to me that I honestly haven't decided if we can, in good conscience, participate this year.”

I received the following in return: 

“I totally understand where you are coming from and would never try to convince you to do something if it doesn’t feel right. You know I would love to see your family’s gorgeous faces, but only if they are smiling and feeling in solidarity with what we represent as a national advocate. I would very much like to separate the joys of the Buddy Walk program and the Ethan Saylor tragedy.I am sorry you feel this way about NDSS. I am really proud of the efforts of my colleagues that have been at the center of all of the conversations and have worked really hard to keep all of our communications about the topic balanced and professional.  Please take as much time as you need to think about it. Registration will remain open until event day.”

This felt like a clear message that we are not welcome at the Buddy Walk unless we are “smiling and feeling in solidarity” with what the NDSS represents as a national advocate.  I’m clearly disappointed in the lack of leadership from our self-described “national advocate for people with Down syndrome” and am not able to separate the “joys of the Buddy Walk program” from the Ethan Saylor homicide.  Having slept on it, I believe I’ve had all the time I need.

This year, my family will not be walking in the NYC Buddy Walk. I cannot, in good conscience, support the NDSS as the same organization I thought it was a year ago. I hope to rejoin the Buddy Walk next year, and I hope that something changes between now and then. I hope you start living your mission:

“The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.”

In sadness,

Stacey Calcano

*For more details on Stacey's personal experience--as well as for specific links and a timeframe for the NDSS response on the Ethan Saylor case, please read "My Not-So-Great Story" here.

Rousing the Rabble

I am not one to remain quiet for very long.  Remember the woman in "Eat Pray  Love" who is "in silence"?  I would love to try that, just to see how far I could get.  I think, in my case, silence would have to mean not writing in a public way (meaning, my mom and sister and best friend won't read it), as well.  I get my ideas across much better through words on a page or screen than I do in conversation.

To keep these words and opinions to myself would be difficult, to say the least.  I would probably need lots of chocolate and terrible movies as a distraction.  Or maybe I could start running again.  That would certainly be the healthier way to go.

I should preface all of this by saying that I don't ever really intend to shoot my mouth off without thinking.  That is why I prefer writing.  I can delete before anyone sees how really crazy I am.  It does not work that way on the phone.  No.  On the phone, a person can sit in their comfy office, surrounded by colleagues that have already been warned of your lunacy with only your muddled CaliforniaMidwestNew Jersey accented voice over the speakerphone in your corner.

Sigh.

Change is really hard.  Change for the better should be much easier than it is, but somehow, we get caught up in what is easy and what is familiar and just what IS.  Sometimes, we get complacent.  Sometimes, we just wish someone else would take up the mantle of our cause and let us sit quietly on the sidelines reaping the benefits.  I'm not knocking that last part.  I have enjoyed many things that others have given their blood, sweat and tears to secure for me.

At some point, however, each one of us needs to stand for something we believe in and let the ones that come after reap the rewards.  Because if we don't, we cannot be sure that there is someone to take our place in the fight.

I just got off the phone after an emotionally exhausting hour of having my ass handed to me by someone that I thought was on my side.  It can be hard to convince people outside the circle of special needs that changes need to be made, but, when you can't even gain consensus with people who are supposed to understand, well, let me tell you, it's a punch in the face.

It cannot be a knockout punch, though.  I need to get out the smelling salts, dust off my pants and my ego and go out there again and again and again, because I know it is the right thing to do.

The main focus, for me, is the human and civil rights cause of inclusion on all levels for those with intellectual disabilities.  If you look at all the civil rights causes that have grown before this one, for blacks, for women, for gays, the fight continues until full acceptance and inclusion is achieved.  This has not really happened for any of these groups, but women have come pretty far (there is just that pesky gap in pay, limiting reproductive choices, rape culture...), blacks have as well (again, a huge list of what could be better) and gays still can't get married in most parts of the country.  So, those fights continue.

For individuals with intellectual disabilities, the fight is still in it's infancy.  Sure, we have come a long way since the days of putting your kid into an institution at birth to be forgotten.  Well, in this country, we have.  Around the world there are thousands and thousands of forgotten children in cold, soulless, hopeless rooms that they will never leave while still breathing.  

http://www.disabilityrightsintl.org/learn-about-the-worldwide-campaign-to-end-the-institutionalization-of-children/ 

So, with all the horrors in the world, I can kind of see the tendency to pat ourselves on the backs and say "Look how much better we are!".  But, when it comes to human lives, better is not enough.  

We need to rise above better and become 

The best we can be.

Open.

Welcoming.

We need to change the way people with intellectual disabilities are viewed.  We need to change hearts and minds.
We need to show those in power that we are all a sum of our strengths and weaknesses and not numbers on a ledger.
We need to show that there are ways to contribute in this world other than through our monetary earnings.
We need to show that equal treatment does not mean special treatment.
We need to be a voice for the voiceless, the powerless and the most in need of support.

We need to get out of our bubble; no matter how safe we feel in there.

Frustration

I just got off the call hosted by the NDSC, the NDSS and FRIENDS regarding Ethan Saylor's death.  I was hoping, not really expecting, but hoping that I would come out of it feeling a little bit better, feeling like they really do get it, that I really am heard...but alas, I do not.  

Training?!?!  Really? We are still talking about training?  How much training does it take to be a decent human being?  How much training does it take to recognize Down syndrome?  Anyone with eyeballs that work can usually recognize the features of Down syndrome.  Do we really need police officers to be specifically trained to "deal" with people with differences?  

Ok, maybe to that last part, we do.  It would be very helpful if officers were taught to recognize a few simple signs in ASL.  It would be helpful if officers were trained that people with cognitive challenges may not respond as quickly as a "typical" individuals to their commands.  Yes, I believe that is true.

What I don't believe is true is that these three off duty officers needed more training.  Between them, they had 40+ years experience.  They knew that the face down restraint was dangerous.  They used it anyway.  They heard him cry for his mom.  They killed him anyway.  They didn't listen to his caregiver.  They didn't wait for his mom, who was on her way.  The left him to stop breathing face down on the disgusting movie theater floor.  

This is a homicide.  It has nothing to do with Down syndrome or obesity or whether or not Ethan broke the law at all (which is highly debatable).  It has everything to do with three human beings who have sworn to SERVE AND PROTECT killing an unarmed individual. 

I want to know why.  I want to know what they were thinking.  Why they thought Ethan posed such a threat as to deserve that face down restraint usually reserved for violent criminals.  I want to know why there isn't more outrage.  I want to know why our national groups haven't publicly denounced the officers actions.  I want to know why they haven't plastered every newspaper with a headline that says "Down syndrome is not a cause of death".

Our national groups should not be focused on training.  They should be focused on telling the world that it is UNACCEPTABLE for police officers to kill an unarmed person.  PERIOD!  The authorities want this to go away and blaming it on Down syndrome is one way to do it.  "Oh, if only they had been "trained" to recognize Down syndrome this never would have happened!"  they cry.  BULLSHIT, I say.  

What they aren't saying is that Ethan was an easy target.  What they aren't saying is that they really don't think Ethan deserved the same rights as you and I because he was different and he dared be out in public.  What they aren't saying is that when it comes to understanding and accepting people with disabilities as equals, we are as far away from that today as blacks were in the 50's and 60's.

This is a civil rights issue and until it is recognized and treated as such, we will get nowhere.

Cue the Carpenters in 3, 2, 1...We've Only Just Begun

I recently "liked" and then, within about ten days, "un-liked" a group on Facebook.  

I liked them because they seemed a bit edgier than the typical Down syndrome page.  

I un-liked them because I was turned off by what I saw as disrespect towards those who had been fighting for years for our children with Down syndrome; a fight that many on the page had only entered into recently.  

I took it personally.  

I now realize that this is silly.  They are mad about how the world sees and treats people with Down syndrome and so am I.  The fight over whether blue nails or wacky socks is a better way to support World Down Syndrome Day is a silly one.  It's time to band together, even if we don't always agree.  It's time for full inclusion for our children, with no exceptions. It's not about making friends with everyone who has a kid with Down syndrome.

And so, the fight continues.

In my last post, I talked about Robert Ethan Saylor; a young man with Down syndrome who died at the hands of the police that he idolized.  

http://concavebed.blogspot.com/2013/03/robert-ethan-saylor.html

Here is some more reaction to the verdict by the grand jury...  

http://walkersvillemom.weebly.com/2/post/2013/03/now-that-the-verdict-is-in-and-no-criminal-charges-will-be-filed-what-have-we-learned.html?fb_action_ids=10152742284040657&fb_action_types=og.likes&fb_source=timeline_og&action_object_map=%7B%2210152742284040657%22%3A168157930006914%7D&action_type_map=%7B%2210152742284040657%22%3A%22og.likes%22%7D&action_ref_map=%5B%5D

I wonder where we go from here.  Where can we go when even national Down syndrome groups are putting part of the blame for Ethan's death squarely on the shoulders of Down syndrome?

https://www.ndss.org/About-NDSS/Newsroom/News-Archive/Robert-
Ethan-Saylor/

Self loathing, much?  How do we move forward in this climate?  How do we affect meaningful change when even those who should be on our side are making it harder?   And don't even get me started on some of the hateful comments from the general public.  I can't even begin to fathom the froth that some will whip up at the sight of differences, much less try and process it.  I just have to ignore it, for now.

I think I found part of the answer to moving forward in the movies and television shows that I have been drawn to, recently.  It's funny how the subconscious works. 

First, I re-watched Les Miserables, which is basically about fighting even when you will probably die a horrible death and never see the fruits of your labor; but at least you'll die fighting. 

Second, I watched part of the series "The Abolitionists" on PBS.  This one really got me thinking.  The parallels between the American slave and the American individual with Down syndrome became so clear; at least to me.  And then I thought, "god, I hope it doesn't take 300 years".  

So, drawing more parallels to slavery and the acceptance of blacks as first human, then free, then landowners and voters, then on to full fledged members of society no different than whites.  Um, yeah.  Do you see the problem here?  

The huge, glaring problem is that they are still fighting; along with women and gays and every other marginalized group out there.  Are we at the back of this line or are we a part of it?  I think we are a part of it, just not enough people realize it yet.  And the thing that scares me the most is that some people haven't even gotten to the "human" part as far as those with disabilities are concerned. Forget school and inclusion.  Forget cute campaigns and slogans and nail colors and socks.  There are some people who don't even see our kids as HUMAN BEINGS.  It's like slave culture 150 + years ago!

What do you do with that?!?

I guess the first step is to ignore the haters (because they will always be there, even 300 years later) and focus on those who are not so closed minded.   We need to become as vocal and well organized as the groups marching in pride parades and maybe (hopefully) join forces with some of them, because in the end, all any of us want is equality and inclusion and acceptance.  We have to fight for the first two and the last will come. 

This guy knows what I am talking about... 

http://www.nytimes.com/2013/03/24/sports/football/scott-fujita-acceptance-by-example-in-locker-room-and-at-home.html?_r=4&

Lastly, I see a huge need to embrace Down syndrome as a part of the human condition.  Just like being born homosexual or female or black; Down syndrome is a part of life.  It's what we do with what we are born with that matters and the first part of moving forward has to be accepting ourselves and our children for what they are.  

For example, I've learned that my child really, really sucks at math.  He does.  Part of this has to do with the fact that I also really, really suck at math, but another part is that he has Down syndrome and that makes learning math even harder.  

I don't want to deny that my child has challenges.  I don't want him to feel that Down syndrome is something he should feel ashamed of, or that he needs to "pass" as typical to be accepted.  I'm ok with him learning at his own pace in a class that is compromised of other children who also learn at that pace.  It's not that I don't want him included with the "typical" (yeah, I am really starting to hate that term) children all the time, it's that I have learned that right now, for him, this is the placement that makes him feel the most successful.  I see it as the same as my oldest son being in a lower level Algebra class and A.P. History.  He learns best in an environment that is suited to his learning level and style.  

And seriously, screw math!  Who cares?  My kid is good at reading, telling jokes and is a warehouse of useless facts and movie quotes that he will gladly recite to anyone who will listen.  As long as he can count change at the grocery store, I don't see a lack of math skills as an impediment to his future.  I haven't used the algebra that it took me two semesters to learn (and forget immediately) ever.  

We need to embrace Down syndrome.  It is a part of us.  Regardless of what happens in the future, we need to fight for our kids today. No more back of the bus.  No more blaming the victim.  It's time to be loud and proud.