Showing posts with label stereotypes. Show all posts
Showing posts with label stereotypes. Show all posts

Friday, February 24, 2017

"...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.

Friday, October 24, 2014

What Ifs

They really aren't helpful, are they?

We all have them.  

Mine range from the superficial "what if I were taller/thinner/better looking?" to questions about my path in life "what if I had moved to NYC instead of Los Angeles?" to "how would my life be different (better/worse) if I had never had kids?"

Yes, I have thought about that last one.  I'm not saying I wish I hadn't had my kids, because that is totally untrue.  Sure, there are moments when I look around my tiny, cluttered house and wish I was living in a loft in Paris...alone.  Who doesn't have these kind of daydreams?  (Angelina Jolie)  I'm saying that maybe I could have been thinner, traveled the world, made some more money, etc, etc, if I hadn't.  And maybe not.  Maybe I would be just as poor, chunky, travel deprived as I am now.  Who really knows?

It's a trade-off.  Okay, for some, it isn't (Hello, Angelina!), but for most, having kids means your life will be somewhat messier and you will be somewhat poorer.  For most parents it is a welcome trade-off.  Our kids enrich our lives in big and small ways every day.  My kids make me laugh, make me proud and make me yell in frustration, sometimes in the span of two minutes.  It's crazy and chaotic and I am happy and feel privileged to have such great kids.


I thought about these "what ifs" when I read an article about a mom with the headline "Mom of son with Down syndrome, 47, wishes she had had an abortion"...or something along those lines.  I refuse to post the article here, but a little Googling on your part will bring you to the story I am referring to.

I read it because a few of my friends had posted it, incredulous that this hateful piece was out there, complete with pictures of the family.  I repeat, pictures.

I am having a hard time wrapping my brain around putting your kid (he's an adult, but still her child) out there with the words "I wish he were never born" or actually, even worse, "I wish I had known what you would be so I could have aborted you" alongside a brand new family portrait.  I am no psychiatrist, but I think there is something deeply, fundamentally wrong with this person.

My first reaction was "how dare she?!"  Seriously, how dare she put her kid's name and picture out there with those words?!?  How dare she pose with him like they were a family?!?!  What purpose does this have?  We should feel sorry for her?  We should pity her?  What does she get out of this?  I have to wonder.  Maybe ( I think, definitely) she has some serious mental disorder.  Maybe she was duped into telling her sensationalized story by some unscrupulous editor (the source it comes from is known for it's outrageous stories and is no friend to the disability community).

Maybe.


I feel awful for her children.  She has another, older son who is missing from the latest family portrait; I would be very interested to hear what he has to say about all of this.  As for her younger son, I just feel so much sadness.  How awful to be the subject of so much loathing and misplaced anger and self-pity.  This woman has decided that her life would have been better without her younger son in it.  Meanwhile, she institutionalized him, so he really wasn't in it much, anyway, so I don't understand how he ruined her life.  She is blaming her crappy life on a child; a child that didn't ask for his issues, or choose his parents.  I have to believe that all any child really wants from their parents is to be loved and accepted.  Feeling like a disappointment is no way to go through life.

I feel sad for her, too, though it's a grudging feeling.  I really don't think she deserves my pity, but I do pity her.  I pity her crappy life.  I pity her inability to see the good and that it outweighs the bad.  I pity the small, sheltered space she must inhabit.  I pity the hatred she must feel for herself.

Yes, I am angry.  I am angry that she put this out there for expecting parents to see.  Will their fears be confirmed with this story?  I hope not.  I hope that they know that there are many, many more parents of kids with Down syndrome who feel pretty much the exact opposite of this one, myself included.

I am angry that people say she is a product of her generation.  That statement is a slap in the face to any parent that chose the hard road of keeping their kid home and fighting for inclusion in those earlier days.  She could have been a pioneer and she chose to be a coward.

Parenting is not for the timid.  At least, parenting well isn't.  

Saturday, February 1, 2014

Hard to Find the Words

You can probably tell by the fly by the seat of my brain writing style that I usually just plow right ahead with whatever I am thinking about.  Today, I am having trouble.

I came upon a website in a roundabout way yesterday that left me with so many sick and angry feelings, that I had a very hard time digesting what I was reading; in fact, I still haven't quite reconciled all the feelings I had.  I might never get to that point.  I am not going to post any links to it, here, but a tiny bit of searching will lead to what I am about to reference.

Someone had posted a question in one of the groups I am involved in asking what kind of support we had when we found out that our children would be born with Down syndrome.  I read through the answers, seeing much of my own experience, until I came to one that said something about being referred to a support group for women who ended their pregnancies.  

I was a little bit taken aback by the assumption of this doctor, referring a woman with a still living, moving fetus in her womb to a support group like this, but quickly recovered.  The doctor might have been jumping the gun, but women can and do end their pregnancies for all kinds of reasons.  I can understand needing a place to work through their feelings.

I am not saying that it makes me happy that a woman would feel the need to end her pregnancy based on a T-21 (Down syndrome) diagnosis.  I'm just acknowledging that it happens.  I don't wish to drag these women through the mud.  There are so many complex issues to the dilemma that factor in:  Lack of updated information, fear, outside pressure, stigma, serious heart conditions, just not feeling "strong" enough... I get it.  I really do.

That a woman might make this decision at all is not what bothered me.  At least, that's only a small part of it.  It does bother me because I take it as a reflection of how people feel about my living, breathing kid.  I take it as a slap in the face; but I know that it truthfully has nothing to do with me and my kid and everything to do with what that woman feels to be true for her.  It isn't about me and I don't wish to make it about me.  It's just hard to separate, sometimes.  Her body, her decision.  I understand and agree that this is the way it should and must be.

What really bothered me was reading how some of these "procedures" take place.  I read accounts of women who got a T-21 diagnosis at 20, 24, 26 weeks, who decided to end their wanted (until this point) pregnancies.  Many of the stories recount tiny babies born alive (after induction) only to die in their parents arms.  Babies taking a few breaths, just to die, as their parents whispered to them that it was for the best.

It was for the best, they told themselves and their babies and they took inkings of their footprints and pictures of their dead children and had them cremated and put in tiny little urns as if they just happened to die and they, as parents, had nothing to do with that process.  They talked about being sad over their "lost" babies.

This was where I began to lose it.


I began to think of all the premature babies I have known and the lengths that their parents and doctors had gone to to keep them alive.  Why does one baby born accidentally at 20+ weeks get all the medical intervention we can throw at them and another get to gasp and die?  

I thought of friends who had had miscarriage after miscarriage; who truly LOST their children.

I began to think of the friends I have whose children are battling cancer and kids who have died from childhood cancer and the Grand Canyon scale difference between these children's parents and those that I was reading about.  

I read one account where the parents justified it saying that if their child had been in an accident and was on life support, they would have had to make the same type of decision.  I completely understand this logic if a fetus' condition is incompatible with life.  There are plenty of complications that fall into this category, but Down syndrome is not one of them.  Yes, babies with Down syndrome can have major heart conditions, kidney issues, feeding issues...the list is long.  But most of these issues are correctable.  With intervention, the vast majority of babies born with T-21 will not just live, but thrive.

There is also plenty of debate about how much intervention is too much and I completely understand it.  I've often thought about babies I saw when my son was in the hospital that had never in their short lives left the ICU or been off a ventilator.  Some were three and four months old.  It is worth noting that none of them had Down syndrome.  One baby in particular caught my attention as he was learning to smile around the vent tube that had been down his throat since he was born.  It was truly the saddest baby smile I have ever witnessed.  I want to cry thinking about it now, even fourteen years later.  I pondered over his suffering, for I have no doubt that he was suffering, despite his early, baby smiles.  Entering the world too early, with unripened lungs, into bright lights and needle pokes and tubes shoved down your throat is really no great way to come into the world.

I often wonder what happened to him.  

All this begs the question:  At what point does it become worth the fight?  Understandably, it is different for everyone.  I think about Christopher Reeve and his fight after he became paralyzed and dependent on a ventilator and a wheelchair.  I think about the people I know who are dependent on various interventions to live.  I wonder at what point they would feel like their lives were not worth living.  Mostly, I see people who are at peace with their circumstances.  Whether you want these circumstances for yourself or your child is mostly irrelevant.  Most of us will never know what it feels like to be in those shoes.

So, what of these parents who decide to let their children go?  At first, I read these late term abortion (induction and delivery) accounts with disbelief, then, white hot hatred.  How DARE they write about how sad they were!!!  THEY CHOSE TO DELIVER THESE BABIES TO THEIR DEATHS AND HELD THEM WHILE THEY DIED!!!  FUCK THEIR SADNESS!!!  

Then, I calmed down and started wondering where the line between abortion and straight up killing, was, because this didn't feel like abortion to me.  It felt like killing.  I began questioning my own pro-choice views.  I came to the conclusion that I am still pro-choice, but that the area of gray had narrowed, somewhat.  I have always found late term abortions troubling, but conceded that they needed to be legal.  I don't want women to be incubators for children they don't want and adoption is not the easy alternative that some would want you to believe.  Yes, it's an option, but not one that I would want forced on anyone.  There are plenty of kids languishing in the system, already.

In the spirit of full disclosure, I had an abortion myself, in my early twenties.  I don't regret it and I don't feel guilty about it.  The way I think about it, I might not have the kids I do now if I had carried on with that pregnancy.  I might have married that other guy.  In my view, I saved the beautiful family I have now by sacrificing those cells years ago.  Maybe you will call me a hypocrite.  Who am I to judge anyone?  I also have the benefit of hindsight working for me.  Women who chose to end their late term pregnancies because of Down syndrome don't have this luxury.  All they can see is NOW and the future is a scary unknown.  I'm sure that plenty of these women will hold up their "rainbow babies" (a term used for a baby born after a miscarriage, but apparently, also after an abortion) as justification for their decisions.  It's not my place to judge or question them.  I can only speak about my own feelings.

I don't know where to draw the line for anyone else.  It's not my right to draw that line.  All I know is that I am troubled by this discovery.  I am saddened and shaken that someone could think so little of a kid like mine, with his messed up heart and his humor and love of WWE, that they would let him die rather than fight, but again, I am making it about me and my feelings.  Hindsight might give us blinders.

I read an interesting blog post the other day; written by a woman whose son died from serious congenital defects after battling and suffering for the better part of his short three year life.  She wrote that if she had known what was in store for her son before he was born, that she would have had an abortion rather than put him through what he eventually did.  Again, hindsight in action.  Her story made my heart ache for her and I take her at her word, that she loved and wanted the best for her son; even if that meant not letting him live at all.

So, what is the difference?  You might be wondering.  The difference is that my kid and kids like him don't suffer from Down syndrome.  They are living and thriving into their 50's, 60's and 70's.  And I look at my son and wonder what about him is so horrible that you can't imagine being in my shoes.  And I am trying, mightily, to put myself in yours.  I was there, fifteen years ago and I chose my son. I realize that fact colors my every thought on the subject.

I don't wish to judge or condemn or ridicule or belittle anyone else's choices and I certainly don't want to become a spokesperson for the anti-choice movement.  I believe in choice.  I just know that I am troubled and that I wish to get to a point in our history that sees Down syndrome in a better, more realistic and hopeful light than it does now.



Friday, November 8, 2013

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.

Tuesday, November 5, 2013

I Love Teenagers

Teenagers get a bad rap.


Yes, they are moody and smelly and occasionally inconsiderate. They cause a disproportionate amount of car accidents for a variety of reasons, not limited to the fact that they don't get that death is a real thing that could happen to them.

I have recently noticed a lot of vitriol on Facebook surrounding the 13-19 year old set, to the point where it actually hurts my heart. Comments from a (hopefully) non-parent after a post about a father and son having issues at a restaurant:
an ambulance would need to be called when I finished whupping him into a pretzel....
Um, really? For talking back to his dad? Seriously? With no knowledge of what happened leading up to the incident, this poster has decided that serious bodily harm is the way to go. I find that really disturbing.  And she wasn't the only one.  There was a lot of horribly misplaced anger throughout.  I hope they were all perfect growing up, or they probably got the shit kicked out of them for rolling their eyes.  


In another post, a mother screams about the "fucking teenagers" that speed down her street.  I mean, I get it.  She was upset about her young daughter running out of the house and into the street.  But, saying it that way makes it sound like a negative epithet.  It sounds really hateful.  


If I yelled about the speeding Jesus Freaks that live down the street from us, would it sound hateful?  Probably.  It would definitely reflect my prejudice.  It would also be true.  They are the ones I am constantly yelling at when they fly through the neighborhood.  And they have kids.  I can't wait until they can drive.  Grrr...  


Isn't it hard enough to be a teenager without everyone hating you?  I can't help but wonder if some of the anger these kids exhibit isn't a direct result of feeling it from other people.


I'm not saying that as a group, they are all wonderful and sweet and odor free.  They absolutely are not. Having three teen-aged boys has introduced me to world of smells that I had not encountered outside a public toilet/perfume counter.  The combination of feet, unwashed sheets and Axxe is an olfactory nightmare.  They have zits and terrible eating habits and their manners are...questionable.


They are also the same babies that I nursed and rocked and sang to and clapped for.  I still clap for them.  And I still cry over their hurts.    Their Twos were not so terrible and even when they were, they were so stinkin' cute.  


Yes, they are harder to love when they roll their eyes and stomp out of the room and say hurtful things.  Isn't that a part of being a good parent?  Reaching down and finding the love?  Reminding them that they are loved no matter what?  Like the terrible twos before, they are finding their way in the world.  They are learning new things and they are frustrated with what they are still trying understand.  They really don't know their place in the world, yet.  The difference is that no one is smiling over their tantrums now.  No one really thinks they are cute; yet they are the same vulnerable kids they have always been.


If you are a parent, realize that your sweet little ones won't always be that way.  Someday, that precious baby will look you in the eye and tell you she hates you and she'll mean it.  And it will hurt.  And you will still love her.  And hopefully, she will remember that.  You will battle, you will take away privileges, you will be deemed "totally unfair" and you will all learn lessons along the way.  


If you are not a parent, please remember that you were a little jerk sometimes too and yet, you are still alive and hopefully, not as much of a jerk today.


Home should be a soft place to land and if that means bearing the brunt of teen-aged angst and frustration, then so be it.  I dished it out and I can take it.  This is where the rubber meets the road.  If we all survive mostly unscathed, we have done our jobs well.


Just some (junk food) for thought.


Tuesday, August 6, 2013

The Fight Goes On...and On

Garrett Holeve is a role model.  At five feet tall and 140 pounds he is a compact ball of muscle.  He works out hard everyday, putting up crazy push up and pull up numbers, jumping rope and sparring.  Garrett, like many other twenty-three-year-olds, wants to fight Mixed Martial Arts.  Nothing unusual about that.

What some are making an issue of is the fact that Garrett has Down syndrome.  Never mind that his dad trains with him and he's lost weight and gained confidence.  Never mind that he is in better shape than 90% of the population, when people with Down syndrome tend to be overweight.  Never mind that he is encouraging a virtually unseen and unheard minority to literally fight for their acceptance. The focus for the naysayers is his Down syndrome.  

When we should be applauding (and many are) his efforts, there are a vocal few that find it appalling that a fighter with Down syndrome is even allowed to exist.  Because, aren't they all just sweet, chunky bundles of love?  Barf.

I get not liking MMA.  It's bloody and brutal.  It leads to injuries, some serious.

But, those facts are true for everyone who enters the octagon.  

If the fighters have medical clearance, what is the issue?

We are not talking about turn of the century side show attractions, here.  We are talking about men who have worked for months and years, only to be turned away at the last minute.  Literally, the State of Florida stepped in five minutes before last weekend's bout, which Garrett and his opponent had trained hours a day for weeks for.
http://www.winknews.com/Local-Florida/2013-08-05/State-stops-controversial-MMA-fight#.UgGDv5KThVJ

That is just cruel.

http://www.bloodyelbow.com/2013/8/6/4594176/mma-downs-syndrome-garrett-holeve-florida-stops-fight-david-steffin-cerebral-palsy

And Bryant Gumbel is right.  He doesn't get it.  He doesn't get that it's not about having a disability, it's about doing what you love.

http://www.youtube.com/watch?v=UXZMxEFRbmE

Gumbel says that these fighters might not understand the long term risks.  As if their loved ones didn't talk to them about what those might be.

And from another angle, do high school or college football players fully appreciate what the long term effect might be from years of cracking helmets with their opponents?  Maybe, but most likely not.

And Gumbel and the other naysayers don't get that this is not meant to be a freak show.  If he sees it that way, that is his problem and he needs to do some soul searching about it.  It is merely about a man who has a dream and that dream is being squashed out of prejudice masquerading as concern.

Garrett is not a pitbull at the mercy of cruel handlers.  Garrett is a full participant in his own life.  And he wants to be a fighter.  Who are we to say no?

If Gumbel is truly concerned about the welfare of people with disabilities, maybe he should help to expose the horrific conditions that people with Down syndrome and cerebral palsy live in today, right now, around the world.

Don't pick on Garrett Holeve and David Steffin in the name of outrage.  Pick on those that don't see these men as capable of making their own choices.

Check out Garrett's ESPN feature here:  http://www.garrettsfight.org/ and judge for yourself.


Thursday, July 18, 2013

Fantasy

I have a rich fantasy life.  I always have.  Most of my fantasies are not fit for public consumption.  Let me re-phrase that:  Most of my fantasies are not things that I want my mom to read.  Maybe in a few years, under a pseudonym.  :)

Anyway, what I am talking about now is a fantasy I have for the future of Down syndrome.  

In this fantasy, Wils and Kate give birth to a royal, gorgeous, sweet baby with Trisomy 21 and they and the Royal Family and the whole world embrace this baby with no reservations. 

The baby is photographed and cooed over and no one on late night television feels the need to tell "r"-word jokes.

What would a famous-from-birth child with Down syndrome do for the acceptance of other people with Down syndrome?

What would it do for children whom, at this very moment, are living in filth and isolation and despair in institutions around the world?

What would it do for parents to be, who, today, receive a diagnosis of T-21?  

What would it do to stereotypes of all kinds?

What would it do to us as human beings?

Would we collectively become more compassionate?  

Would we start to look at our own personal prejudices?  

Would the lightbulb go off for the world that maybe, just maybe we are all one, instead of: 

black
white
brown
native
freckled
christian
muslim
atheist
gay
straight
somewhere in-between
young
old
abled
disabled
rich 
poor?

Would we start to think in terms of love instead of labels?

Possibilities instead of limits?

Would we start to see a BABY; nothing more or less than that.  Just a baby, wanting and needing love and nurturing and every chance available to grow into their potential, whatever that potential may be.

It is a fantasy, I know.

But, oh, if it were real.


Wednesday, May 29, 2013

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.


Tuesday, April 23, 2013

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.

Thursday, February 28, 2013

Cool Things About Being a Man

This is a real list that a friend of mine posted.  He did not write it.  He just posted it as a little ha ha! without (hopefully) thinking too much about it.  He's probably going to wish he had thought about it.  :)

Cool Things About Being a Man

(or, I spend way too much time making asinine lists and way too little time interacting with, you know, women)

1- Your ass is never a factor in a job interview.
2- Your orgasms are real. Always.
3- Your last name stays put.
4- The garage is all yours.
5- Wedding plans take care of themselves.
6- You never feel compelled to stop a friend from getting laid.
7- Car mechanics tell you the truth.
8- You don't give a rat's ass if someone notices your new haircut.
9- Hot wax never comes near your pubic area.
10- Same work, more pay.
11- Wrinkles add character.
12- You don't have to leave the room to make emergency crotch adjustments.
13- Wedding dress $2,000.00; Tux rental $100.00
14- If you retain water, it's in a canteen
15- People never glance at your chest when you're talking to them.
16- New shoes don't cut, blister, or mangle your feet.
17- One mood, all the damn time.
18- Phone conversations are over in 30 seconds.
19- A five-day vacation requires only 1 suitcase.
20- You can open all your own jars.
21- You get extra credit for the slightest act of thoughtfulness.
22- Your underwear is $10.00 for a three-pack.
23- If you are 34 and single, nobody notices.
24- You can quietly enjoy a car ride from the passenger's seat.
25- Three pairs of shoes are more than enough.
26- You can quietly watch a game with your buddy for hours without ever thinking "he must be mad at me".
27- No maxi-pads.'
28- If another guy shows up at the party in the same outfit, you just might become lifelong friends.
29- You are not expected to know the names of more than five colors.
30- You don't have to stop and think of which way to turn a nut on a bolt.
31- You are unable to see wrinkles in clothes.
32- The same hairstyle lasts for years, maybe decades.
33- Your belly usually hides your big hips
34- One wallet and one pair of shoes, one color, all seasons.
35- You can "do" your nails with a pocketknife.
36- Christmas shopping can be accomplished for 25 relatives, on December 24th, in minutes.
37- The world is your urinal. xD


I'm not going to address every list item, just the ones I find the most disturbing/idiotic/ridiculous.


2- Your orgasms are real. Always.  Any grown assed straight woman worth her vagina stopped faking orgasms the second she met a guy that knew what the hell he was doing.  For some of us lucky enough to have met this person early on, faking was never a thing...at all.  Any woman faking for the sake of their lover's feelings needs to think about how he will feel when he realizes she is faking.  If you aren't into it at the moment and you like the guy enough, just give him a blowjob and let him go to sleep happy.  If you really don't like him AND he can't get you off, you have bigger issues and I am no psychiatrist.  



3- Your last name stays put.  Hello, Sweden.


6- You never feel compelled to stop a friend from getting laid.  Mostly because if your friend is anything like you, getting laid happens about as often as an asteroid passing within 17000 miles of earth and a giant meteorite hitting Russia in the same day.  


10- Same work, more pay.  Fuck you.


17- One mood, all the damn time.   I did not realize that Neanderthal was a "mood".


27- No maxi-pads.'   Seriously, Fuck you.


33- Your belly usually hides your big hips.  Wow!  Fat AND a pear shaped ass?!?!?  I'm getting hot just thinking about this guy!  ***shudder***


37- The world is your urinal. xD  Seriously?  That's all you got?  You can pee outside?  Let me tell you something, I can pee outside, too and I have on a few occasions when I've either been camping or so drunk that I really didn't think about how gross someone peeing outside is.  Unless you are five years old, find a restroom, asshole!