Anyone who has ever had to rush to a public bathroom to deal with their infant or toddler's horrific poop explosion understands the feeling of horror one experiences upon discovering that there is no changing table available.  This is the problem that bill HB2529 attempts to address here in Arizona.

The bill was written to address the general concerns of parents of infants and young children, but there is another group of parents who heard about the bill and decided to get involved.  These are parents of teenage and adult children who are still in diapers, a group who has called themselves Dignified Changes.

If you haven't experienced it, it's hard to fully understand the daily struggles of parents whose teenage and adult children need diaper changes, and what that looks like in a public space.

​This is an issue that I admit I didn't even realize was a problem until I heard about it from other parents in my local disability community.  My friends told stories about the isolation of deciding not to venture out to events and community spaces, or the humiliation of trying to change a diaper in the back of a pickup truck or on the floor of a public restroom.

Having heard about bill HB2529, this group of parents and their supporters worked with legislators to get an amendment added to the bill to include adult changing stations in new publicly funded buildings. 

In an ideal world a universal changing station would include a wheelchair hoist, and would be available in every public building in the state. 

The compromise that Dignified Changes came to with legislators was that the new universal changing stations would be large enough to push a wheelchair into and include a table large enough for an adult to lie down on, and low enough for another adult to be able to lift them from a wheelchair onto the surface. The average cost of this would be around $300-400, making the impact of this on taxpayers very minimal.

We were all very excited when the amendment was voted on and passed unanimously by both Republicans and Democrats on the Health and Human Services Committee.  Now all that had to happen was for the bill itself to be added to the Rules Committee agenda for review and a vote, which we all thought would be a simple step in the process.

Unfortunately in our excitement we had forgotten that some politicians see our democracy as a game, with the concerns of their constituents used as a ball to kick around the political field.

So instead of the bill moving forward it has gotten stuck on the desk of Representative Anthony Kern.

Kern is not only refusing to put the bill on the agenda, he's also not responding to the many emails and phone calls from concerned citizens who want to know why. 

In the meantime he has had time to add to the agenda such important and critical bills as one on whether our state drink should be lemonade.  

To be clear, there is no logical or party based reason that bill HB2529 should not be passed. This is not a bill that would impact local businesses or cost taxpayers thousands more dollars in renovations to already built public spaces. 

This bill only impacts future builds of publicly funded buildings and large renovations, adding a minor cost to the project and a major benefit to the community.  This bill was unanimously passed by both Republican and Democratic legislators on the Health and Human Services Committee.

Mr. Kern has an opportunity to be a champion to Arizona families and the disability community. All he needs to do to help make the lives of thousands of people better is to add this bill to the agenda so that it can be reviewed and voted on. 

If you are outraged by this, as you should be, feel free to give Mr Kern, or Governor Doug Ducey, a piece of your mind and let them know what you think about it.

There are many easy ways to get involved and help this bill pass: join the facebook group, call or email [email protected]/602-926-5766, follow the hashtag #dignifiedchanges on instagram or twitter, or come to the state capital tomorrow to "play ball" on the capitol lawn with other families hoping for "change" in Arizona's public bathrooms.

One day while talking about our newborn son who needed to be on oxygen my husband Max and I had an epiphany. "It's like our son is a space explorer! He just needs an oxygen pack to get around." And so the concept of The Littlest Astronaut was born.

​Max and I both wanted to be astronauts when we were little, so we found the concept of a baby space explorer very appealing.

It is Down syndrome awareness month and I have to tell you, sometimes I wish that I could be a little less aware of Down syndrome. Some days I don't feel like being an advocate, or a mama bear or a warrior mom. Some days I just want to be a regular old mom.

This weekend is my birthday and I will be spending it at a leadership workshop on how to advocate for people with disabilities.

The next weekend I'll be at the Buddy walk, listening to speeches about Down syndrome and walking with my son Benny. 

 Personally I would rather people forget that Benny has Down syndrome at all.  I wish they could just see him for who he is - a bright and bubbly preschooler.

But even though I'm tired of talking about Down syndrome I keep on doing it. I keep on writing blog posts and sharing in real life and on social media because every day I see how much prejudice there still is against people with Down syndrome.

Disabilities are the last acceptable prejudice and I want to change that in my lifetime. For Benny. And for all of the many people who have disabilities. And so I keep soldiering on this uphill battle, thankful to all who came before me and paved the way for me and my family.

Recently I encountered this prejudice while looking into kindergartens with my friend who has a typical son the same age as Benny. The experience was heartbreaking. 

A woman giving a tour at one middle of the road charter school was stumped when my friend asked what kind of services they had for students with special needs. She had just finished waxing poetic about the self-contained classroom for gifted and talented students (GATE) but stuttered "special needs?" and looked completely perplexed as to why we would ask about something so obviously horrifying. (Nevermind that services for gifted students are also under the umbrella of special education.)

"My son has Down syndrome" I explained.

"Oh, we've never had any students with Down syndrome. I don't know what we would be able to provide for a student with Down syndrome." she said looking absolutely petrified at the thought of my son and his potential extra needs coming to her school.

Defensively I told her that I had visited our designated school and that it was far superior to this one, to which she looked relieved and told me that I should "just keep him there".

The next day my friend called me ecstatic about a public Montessori school he had just toured. I listened excitedly as he talked about the open classrooms with multiple grades, the project based learning, the GATE certified teachers in every classroom and the violin training every student receives. Then he mentioned that he had asked and the school didn't have any resources for kids with special needs like Benny.

I got off the phone and cried. I wanted to be happy for my friend, I really did, but in that moment all I could feel was heartbreak that my son wasn't welcome at that school.

And that is what discrimination looks like. These publicly funded schools are actually required by law to provide a free appropriate public education to all students regardless of their extra needs, but they don't want to. So instead they discourage parents of children with disabilities from enrolling their children, despite decades of research that shows undeniably that an inclusion model that provides appropriate accommodations is far superior for every student in the classroom.

Last night the fact that my son is being denied the same opportunities for kindergarten as his peers made me cry.

​But tomorrow I will not cry. Tomorrow I will arm myself with an idea. The IDEA specifically, the Individuals with Disabilities Education Act. And I am going to go to the district office and I am going to give them a piece of my mind.

This is what happens to parents of kids who have Down syndrome. You get tired of talking about it. You get tired of bringing everyone's awareness to it. You wish everyone would be less aware of it. But then somebody discriminates against your kid because of it, and they awaken the advocate, the mama bear and the warrior parent inside of you. Soon they will hear your roar and they will know no mercy.

Tomorrow we will be wearing our crazy socks (and shoes) for World Down Syndrome Day to represent the joy that people who are a little bit different bring into our lives. This will be the third World Down Syndrome Day we've celebrated since having our son Benny, and I have to say that in his three short years he's already busted a lot of the stereotypes I had about trisomy 21.

One of the concerns that every parent has for their child is whether or not they will be able to have a career when they grow up. In America the unemployment statistics for people with developmental disabilities is unfortunately very high.

But Benny has already had his first paid job! When he was just two years old Benny landed a modeling gig with Target. He already has his very own bank account.

We had heard that it's rare for people with Down syndrome to be able to drive. This was something my husband was especially concerned about. Watching Benny drive his power wheels around we are pretty certain that he will be able to drive a real car around someday if he wants to. 

Another worry has been whether or not Benny will be able to make and keep friends. So far he has proven to be very outgoing, and every day when I pick him up from school his friends say bye to him and give him hugs.

He has also made several friends outside of school who really enjoy his company. Although Benny has limited speech, he is very expressive and imaginative in his play. In most ways he is a pretty typical boy - he and his friends love to play with trains and cars and action figures.

He also loves to play with toy guns, and will pretend to shoot his friends, and very dramatically fall down after getting shot himself. Unfortunately this is starting to get him in trouble at school, so I'm working on redirecting this behavior, although I secretly love that he is such a little stuntman!

Recently we decided that it was time to talk to one of his friends about the fact that Benny has down syndrome.

Because his friend is only four we kept the information very simple, and just explained that Benny has special needs because he has Down syndrome, which means he was born with an extra chromosome. That this little difference means that sometimes it takes him longer to figure out how to do things, and sometimes it's harder for him to understand or communicate. His friend listened to our explanation, said "ok", and moved on to play with his train tracks.

The two have been playing together for over a year now and I had been nervous about how this conversation might go. I feel very lucky that this little boy has such a big, sweet heart that he completely accepted this new information about his friend, and has continued to ask to have playdates with Benny even after finding out about his Down syndrome.

This is the kind of response that I was hoping for, and that I wish everyone would have when they meet someone with Down syndrome. "It's just a little difference, no big deal, let's hang out!"

As the mother of two sons, it has been weighing heavily on my mind that by placing the blame for rape culture solely on the hands of uncontrollable men, we are avoiding the true change needed to achieve a healthy sex culture.

As a society we have been sick for a long time when it comes to healthy sexuality. Seeing so many men being held accountable for sexual harassment is a sign that we are ready to address this issue. Many women are feeling hopeful for the first time that we might someday be able to live free from fear of unwanted sexual attention.

While I too would like to see major social change, I am concerned that the current climate of blame is counterproductive to true healing. 

My son came home from school the other day and described a class discussion he had that day on the difference between sexual harassment and flirting. His class concluded that the only interaction that can be considered flirting would be saying something positive like giving a compliment...and even that could be considered sexual harassment if you gave too many compliments or the wrong kind of compliments.

While I think that it is huge progress that the subject of sexual harassment is being discussed in high school, I'm also concerned. My son is fourteen and afraid to talk to anyone of the opposite sex for fear that it will be considered sexual harassment, and this breaks my heart. I want my son to understand respect and consent, but I don't want him to think that being nice to someone of the opposite sex is the same as sexual harassment.

​The entire topic has been on my mind a lot lately, and I know I'm not alone. 

Recently the #metoo social media campaign filled my feeds with women sharing their upsetting experiences of sexual harassment or assault.

​This triggered a tidal wave of anger and accusations, and it seems now that every day there is a new revelation of a man in the spotlight who at some point harassed or assaulted someone.

I feel terrible. I feel sad for these women who experienced this and now have to relive it in some way by coming forward with their stories.

I've been on both sides of the equation. And while I don't condone the behavior described in these stories, I do have sympathy for these men because I once had a terrible incident where I was the one on the wrong side of a sexual harassment accusation. 

I was mingling at a friend’s wedding reception so I sat and talked with a couple of teenage boys sitting at a table by themselves. They were interesting conversationalists and I enjoyed chatting with them. I invited them to walk around and check out the property with me because it was a lovely place with a view.

After a few minutes I excused myself and moved on to talk to other people at the party. Suddenly out of nowhere the mother of the groom came up to me and shouted “You should be ashamed of yourself!” I was stunned, and asked what she meant. “You know what you did.” She replied, and stomped off in a rage.

I had no idea what she was talking about, but it upset me very much. I cried and went home shortly after.

Later a mutual friend told me that this woman thought that I had been coming on to the teenage boys. What really hurt was that my friend whose wedding it was didn’t defend me, and hasn’t spoken to me since.

The entire experience left me feeling ashamed and defenseless in a way I had never felt before. I was a mother with a son not much younger than these boys, and it had never occurred to me that merely talking to teenagers at a party could be misconstrued as inappropriate sexual behavior. I wracked my brain and the only thing I could come up with that would have warranted this accusation was that I had been friendly and was wearing a low cut dress that showed some cleavage. 

The truth is that our society still has serious sexual hangups. I am fortunate that I’m a woman. I can only imagine how much worse it might have been for me if I had been a man accused of flirting with teenage girls. 

Because of this experience I no longer automatically assume that every person accused of sexual harassment is a perverted monster. 

I am not suggesting that the men currently in the spotlight have done nothing wrong or that we absolve them of their actions, but I would like to suggest that we take into consideration the larger picture. 

Three Years I held it in
Dark clouds growing bigger and bigger
Threatening to burst out of me
Like a hurricane in September


Three chromosomes where there should be two
Should be are the words we shouldn’t say
Instead our silence fills the empty spaces
until there’s no air left to breathe
​

Gasping I unravel
Spitting words out I would take back
But the storm has come
And it is raining fire in our home


Everything left unsaid catches like gasoline
Creating supernova explosions that become
Invisible galaxies around us
An unnavigable universe better left unexplored


Everyone grieves in their own way
My grief is like a knife
I stab myself with over and over
Until there is no blood left to pour


Hollowed out of blood and storm
I am merely a shadow being as I turn now to you
Knife wielded uncertainly
As I contemplate where to stab first


I wonder if our grief will mingle
In the way that we have forgotten ourselves
Blood and ash and tears
Intertwined, a living being become one


Shall we take her then to the river of sorrow
And push her in until there is nothing left of her
Will there be anything left of us then
To hold on to in this darkness


Quickly I strike with unwarranted vengeance
Your careful countenance crumbles for just a moment
For one second we truly see one another
Lit up by the lightning of the storm you unleash


Ash rains down on what’s left of me
Covering me until I’m grey as a statue
Tears mix with ash cementing my face
Into a semblance of forced content


Now it is over and we can go back to pretending
That everything is just fine
As you rush off to your appointment
And I sit down to write a poem about it

It’s easy to look at the violence this past weekend at the white supremacist rally and think “those people are evil, they are nothing like me, and I could never do something like that”.

But if we are going to evolve past racism we have to put down our self-righteousness and look deep into our own souls.  The first step to overcoming a problem is to admit that it exists.

I’m a racist. You’re a racist. We’re all born racists.

There is an evolutionary aspect to racism.  People who are very different from people like us represent a possible danger to our way of being.

Sometimes this fear is unwarranted. Sometimes someone from a different race can come into our lives and teach us a better way of being.

And sometimes they want to control us, take everything we have or even try to wipe us out completely, like the Europeans did when they arrived on this continent.

The ability to quickly assess and pass judgment on our fellow humans has a distinct evolutionary advantage, so it’s no wonder that we have to fight our natural instincts in order to be kind and tolerant of one another.

Personally, from an early age I was taught that tolerance, peace and love were good, and that racism, violence and hatred were bad, so this is how I tend to operate in the world.

When I think about the Grand Dragon of the KKK saying that he’s “glad that girl died” during the Charlottesville rally, it is pretty incomprehensible to me.  It makes me want to deny my own basic humanity, to push away the fact that if I were raised differently I might be capable of acting in such a way.

As easy as it is to condemn racism, if we want to eliminate it we must first embrace it. The truth is we have to be taught to be tolerant, not the other way around.

To put an end to this type of racism, violence and hatred we must find a way to teach tolerance, peace and love on a grand scale.  But first we have to acknowledge the root cause of the problem, which is our inherent fear of differences.

Nowhere in our society is our fear of difference more apparent than in the way that we approach people with disabilities.

As a parent of a child with down syndrome, my heart was hit hard this week by a CBS news report that “Iceland Is On Pace To Virtually Eliminate Down syndrome Through Abortion”.

While I had already known about the statistic that Iceland has a near 100% termination rate of fetuses that test positive for trisomy 21, watching the news report made that statistic much more real for me.

When we talk about race we are generally talking about classifying people by a set of common characteristics that they’ve inherited through their genes.  People with Down syndrome have a set of common characteristics caused by their extra chromosome that others in society use to identify them.

I would argue then, that Down syndrome is a race, and that the massive efforts by governments around the world to eliminate this chromosomal abnormality is institutionalized racism.  Others would say that it is simply eugenics, whether you classify Down syndrome as a race or not. Either way, it is a moral quandary that we as a society need to examine.

Before I had a child with Down syndrome the article on Iceland probably wouldn’t have even caught my attention.  I certainly wouldn’t have drawn a comparison between the blatant racism of the KKK and that of governments around the world attempting to eradicate chromosomal abnormalities.  “Families have the right to be informed and make that choice” I might have said.

But then, before I had Benny I didn’t know anyone with Down syndrome, or any other chromosomal abnormality.  In fact, I distinctly remember that while I was pregnant with my older son the thought of him having a disability or deformity was one of my greatest fears, right up there with the idea of having twins.

In our achievement driven world having a child with Down syndrome has been a huge eye opener for me. I didn't think much about the nature of disabilities before I had Benny, but now that I know him I want everyone else to know that disabilities bring something valuable to our world.

Every child brings their own unique set of attributes into the world and Benny is no different. His beautiful smile and exuberant nature lights up our lives. He has a knack for cheering people up.  He has a profound appreciation for good music, friends and family. These are not the achievements that pediatricians check off on developmental questionnaire boxes, but the best things in life cannot be measured.

Recently I watched the TedX talk Socially Constructing Down Syndrome by fellow rockin mom Cara Jacocks. Towards the end of her talk she mentions the many accomplishments of adults with Down syndrome who have achieved what we consider stereotypical success in our society - high profile jobs as actors, models, athletes, entrepreneurs, etc.

While these successes are exciting, and as a mom I always love sharing the accomplishments of others with Down syndrome, I worry that highlighting these rare high achievers may do more harm than good towards changing the underlying prejudice that is so harmful to our families.

If we really want to change the conversation around disabilities we need to talk about what those disabilities bring to the world, not what people with disabilities are "able" to do despite their disabilities.

Many people with Down syndrome will not become high career achievers. In fact, the statistics on employment for people with intellectual developmental disabilities is abysmally low. Many of us who have children with Down syndrome know that there is a high possibility that they may need care for their entire lives.  But that does not mean that their lives are not worth living.

While working on an episode of my podcast T21Action last year I had an eye opening discussion with Sandra McElwee, author, activist and mother of Sean from the reality show Born this Way. One of the books she has written about Sean talks about the importance of inclusion in education. When I asked her why inclusion was important, she surprised me by saying that inclusion is better for every child in a classroom, including the highly gifted children.

Statistically, every student in a classroom benefits from having children with disabilities present.  All of the students benefit not just socially, emotionally, and academically but they even score higher on intelligence tests.

Apparently learning together with people with disabilities actually makes you smarter. 

This kind of blew my mind. I asked Sandra how sharing the classroom with a student who has disabilities could actually improve IQ scores of neuro-typical students because it seemed too incredible to be true. She said that we learn best when we teach others, and that it's also a confidence booster, both of which can increase intelligence test scores.

We live in such a high achievement world, and I’ve seen so many parents fighting to get their children into the “best” schools, which are so often ones that cater to students who are gifted high achievers and exclude different learners who may not test as well.

​The purple mountains that surround Tucson rise up sharply, towering thousands of feet above us, reminding us how small and insignificant we really are. When we drive out of the city we can see breathtaking views of saguaro cactus forests that go for miles and miles all the way to the horizon...what a sharp contrast it is driving just a few hours away to the red rocks of Sedona or the pine forests of Flagstaff.

The entire country is full of contrasts like that. Growing up we spent summers driving around the United States with my grandparents. We visited the geysers of Yellowstone, drove over the vastness of the Mississippi river, and even made it to Washington DC to see the White House and visit the National Monuments and Smithsonian Museums.

When we were done driving we usually spent the rest of the summer in rural Illinois. I loved tramping around in the woods picking raspberries and fishing with my grandfather.  I never saw the leaves change in the fall though. 

It wasn’t until my first year of college on the East Coast that I got to see a real New England fall. I remember the moment that I looked up and saw thousands of trees turning vibrant shades of fire, rust and gold. It took my breath away the first time I saw it, and every year after that. America the beautiful.

To a developer or a businessman these open spaces might seem like a waste. “Why do we protect so much land when we could be exploiting it for financial gain?” I see this question phrased in so many different ways in the policies and ideas presented by the would-be president.

It takes thoughtful leadership to remember why we protect these precious places. The ability to think beyond one’s self, and to think beyond the needs of the moment. That is an ability that Donald Trump does not seem to have.

There are many more reasons why I think Trump is unfit to lead our country.  Reasons that you can verify with a simple search looking at his history of corrupt business deals, his many business conflicts of interest that would crack the foundation of our democracy were he to take office, the 75 pending lawsuits, the 25 million dollars he agreed to pay to the victims of Trump University and the current investigation into his charitable foundation, his infidelities during his three marriages, his history of sexual assault, and the many insulting things he has said while campaigning, from making fun of disabled people to war heroes to members of his own party. Or the time he bragged about grabbing women "by the pussy”. 

There are so many reasons why Trump is unfit to be president that it’s hard to list them all.  And there are some reasons why he might be a terrific president too, which is why so many people in this country voted for him. It is important to acknowledge that too. 

But it’s impossible to know whether he will be a terrific or terrible president because he is wildly unpredictable, which is probably the biggest reason of all why it is so important that your vote prevents Donald Trump from taking office. 

The best predictor of future behavior is past behavior. The future of the entire world is at stake. Please use your vote wisely. For me, for my family and for the future of this beautiful country.


Sincerely,


Taymar Pixleysmith