Uncomfortable Truths

Three months ago today, a man died. His name is Robert Ethan Saylor (“Ethan”) and he died over a movie ticket.

After watching a movie along with his personal care assistant (PCA), he remained inside the building while his PCA went to get the car. Mr. Saylor went back inside the theater to watch another screening of the movie, but did not buy an additional ticket. Movie theater staff were not able to get him to leave or purchase the additional ticket so they contacted mall security. Three mall security guards responded, all off-duty law enforcement officers moonlighting at the mall, and attempted to get Mr. Saylor to leave the theater.

Witness reports state that Mr. Saylor was “verbally and physically resistant” to the officers, but we do not know much more than that – the why he refused, or the how, or how long they gave him to collect his thoughts and understand the situation. And while witnesses report his resistance, they also report that he was shouting for his “mommy” all along. In response, the officers used three pairs of handcuffs to tie Mr. Saylor’s hands behind his back and placed him in a prone position on the floor. In that position, Mr. Saylor stopped breathing. Witness reports state that bystanders – not the officers – noticed he had stopped breathing and informed the officers. The officers removed the cuffs and performed CPR.

Mr. Saylor died. Tell me, in what world does a reasonable human being (much less three) hear a grown man, with an obvious cognitive disability, call for his mommy and think the appropriate response is to cuff him and put him face first on the ground? We are willing to surround a compound full of weapons for days on end while negotiators try for a peaceful resolution, but one man – unarmed – in a movie theater requires immediate, forceful restraint that results in his death?

The coroner ruled the death a homicide, but did indicate that Mr. Saylor’s health conditions (heart disease and obesity and, strangely, Down syndrome itself) may have contributed to the speed of Mr. Saylor’s asphyxiation. Because this was a fatality at the hands of off-duty law enforcement officers, the case was brought to a Grand Jury who then reviewed the evidence but decided not to bring forward criminal charges against the officers. It was indicated that Mr. Saylor was “compromised” by “his Down syndrome.”

I’ve said it once, I’ll say it a thousand times: Down syndrome in and of itself is not a way to die. It is not a deadly condition.

I am livid. I am heartbroken. I am scared. I am advocating for justice.

What makes this tragedy even more horrific is the response – from those within Down syndrome world and those on the outside. There are people claiming it’s Mr. Saylor’s fault (yes, because it is reasonable to be arrested over a movie ticket; it is reasonable to be cuffed and die over a movie ticket). There are people claiming that his mother “never should have let him leave the house.” There are people claiming these officers were completely right in their reaction – despite the fact that between the three they have 49 years of law enforcement experience that should have taught them, explicitly, that there was no need for escalation in this scenario. There are people who want us to hush up and move on, and people who think that more training for law enforcement is the answer. Tell me: what would training teach you that 49 years of experience can’t?

A man died over a movie ticket. Literally a movie ticket. A man died while calling for his mom. Over a movie ticket.

Frankly, none of these reactions surprise me at all and this resistance, this avoidance is absolutely what I expected – it’s exactly what happens whenever anyone with a disability has the audacity to demand being treated like a human being. This tragedy has uncovered again, brought into the stark light of day, some very uncomfortable truths about what it means to have a disability in this country. And instead of seeing that for what it is, and working toward change, there is a lot of hate out there, and anger, that some of us have the audacity to point out these truths. And beyond that, there is a sad amount of avoidance and hoping we can sweep this back under the rug.

Uncomfortable Truth 1:

The world is not always a pleasant place for people with disabilities. This is an entire segment of the population that continues to be marginalized, ignored, denied access, patronized, put away, put down. There is a deep ugliness in the heart of some people when it comes to disability. I’ve been asked why I didn’t “take care of it” (meaning Down syndrome, meaning my living, breathing, beautiful child) when I was pregnant. It is not uncommon for people with disabilities to hear “I would kill myself if I were you” or “I’d rather die than use a wheelchair.”

We hide behind our charities, our non-profits, our laws. We say that our fellow human beings are taken care of, they are loved, and included. But the harsh truth is they aren’t always, and we prove it every single day. It’s the blocks and blocks you have to go to find a curb cut. It’s having to fight to get your kid an education when the law says it should just be given to you. It’s the employer that refuses to hire someone with a disability, even though they are as qualified for the job as anyone else. It’s the continuous slashing of benefits, health coverage, and supports. It’s people thinking they have the right to tell you that you should have had an abortion, that your kid shouldn’t even be alive.

And in Mr. Saylor’s case? It manifested itself in a really horrible, irrevocable way. It’s the bystanders who refused to speak up and call for cooler heads. It’s the officers who determined that the appropriate, measured response to lack-of-movie-ticket was three sets of cuffs and down to the ground. It’s the Grand Jury who decided that despite a homicide, despite the absolute negligent behavior of three law enforcement officers, there should be absolutely zero punishment whatsoever in this case. Just another disabled guy out of this world, no longer a burden to society.

Uncomfortable Truth 2:

These prejudices exist within the disability community. I have been moved to tears by some of the things I’ve read by my fellow Down syndrome moms. People wondering out loud if maybe Ethan shouldn’t have been in the movie theater at all. People wondering out loud if maybe he hadn’t had enough “compliance training.” All the “my kid would never do that” I’ve seen, and the “I’ll never let my kid out of my sight.” We preach about independence and going to college and real work for real pay, but when we find out about a mom who sent her son to what should be one of the safest places on earth – a movie theater – we condemn her. We gather our chicks back into our nests and turn our backs on her.

Yeah, we all have our own personal beliefs about disability. We are all the people we were before receiving the diagnosis. But a little unity wouldn’t hurt here, and a little support for Ethan’s mom, the choice she made to let her child into the world, and the belief that Mr. Saylor was in fact capable of leaving the house…well, that would go a long way. How can we expect the world to welcome our children if we ourselves are so quick to judge? There should be a single message coming from the Down syndrome community: Ethan Saylor had the right to see a movie in a public place. And he had a right not to die.

Instead? Discord. Or with some, worse than discord – silence. Crickets. Our prejudices are showing. Time to deal with them.

Uncomfortable Truth 3:

Sometimes law enforcement officers do not do the right thing. Period. Full stop. And the really uncomfortable truth? There is a long history of law enforcement officers causing harm, and causing death in situations that never should have resulted in such extreme measures.

I am appalled at the readiness to believe that these three officers were 100%, absolutely, without doubt in the right – and Mr. Saylor is completely to blame for this. A man who was likely scared, confused, did not like to be touched – a man who expects law enforcement to be wearing uniforms and carrying badges – a man whose only crime was failing to buy a second movie ticket died because of the poor choices of law enforcement. There’s really no way around that. If the officers had chosen to back off, to de-escalate the situation, to take ten seconds and think “huh, all he did was not buy a ticket? Let’s wait for his caregiver to arrive to buy a ticket” would Mr. Saylor be dead today? Probably not.

It’s a horrible truth that sometimes the very people we trust to protect us do the worst thing imaginable: kill someone. And the companion truth is sometimes those in law enforcement deserve consequences for the poor choices they’ve made, just like us civilians.

Uncomfortable Truth 4:

The fix to this isn’t going to be quick or easy. There is no “feel good” solution to this. There is a lot of push right now for “additional training” as the answer. The uncomfortable truth here is the training isn’t going to change much – especially if the training is just about people with Down syndrome. Down syndrome didn’t kill Mr. Saylor – three off-duty police officers who were over zealous and didn’t take the time to stop and think did. In fact, these officers likely already had training in the two things that might have saved Mr. Saylor: de-escalation and proper restraint procedures. Their decades of combined experience should have given them at least a few opportunities to work with people with disabilities. Training does not fix the deeply rooted societal belief that Mr. Saylor never should have been at the movie theater to begin with.

There is no way to pat each other on the back, sing kumbayah, and move on. It hurts to say that, it’s hard to admit, but it’s the truth. A man is dead. No way to tie that up in a pretty bow and call it a day. And frankly (and I’m looking at you, NDSS) – it’s an insult to Mr.  Saylor’s life to think that we can.

What’s needed here is justice. The officers need to be held accountable. And then the Down syndrome community needs to hold society accountable. Challenge these ugly ideas, create a world where our children can go to the movies.

Then we can sing kumbayah.

***

So. What can you do? Join us in our push for justice for Ethan.

There is a petition for the Maryland Attorney General to open an independent investigation.

We are also using the power of Twitter to contact those with a bit of clout and rally them to our cause.

Please check out what I wrote up. With a Little Moxie is hosting the information. One-page fact sheet. Twitter 101. List of Twitter handles to call out in your Tweets.

No Ordinary Boy

A friend sent me her copy of No Ordinary Boy, a non-fiction personal narrative about a mother raising a child with a complex disability. It’s a slim volume, so while Rowenna took a long nap, I settled down to read.

It’s a beautiful book – heart-wrenching without being overly sentimental, spare prose offers you a glimpse into her life with Owen while still, I suspect, shielding her most cherished, intimate memories of her child.

While Owen’s diagnoses are vastly different than Rowenna’s, I felt a kinship with this mother and there were many times I put the book down to mull over something she had written, only to realize my own fledgling thoughts about disability were reflected back at me throughout the book.

By the end I was in tears (as the subtitle of the book suggests, her child does pass away), and left with more questions than answers as to where I go from here as a mother to a child with a disability, as a wife, as an advocate.

She poses some tough questions; she challenges the reader to consider the “why?” of it all – the things we do in Disability World that sometimes leave us with the nagging sense that there could be something more, something better, or that inaction at certain times is better, healthier, and a more authentic life experience. (The author also wrote a fabulous piece about “Fake Work” – shared here.)

And above all, reading this book was yet another affirmation that sometimes it’s ok to question all that is offered to and thrust upon us when we receive a diagnosis (of any kind), and that there’s something to be said for just letting a kid be a kid.

I would recommend this book to anyone – parents, other family members, caregivers, even doctors and nurses.

As for my sweet girl, she is doing well. She appears to be in a stage of increased desire for communication so we are trying our best to help her find ways to let us know what’s on her mind. She is also going through an “interesting” stage in which she will only eat what we eat, exactly how we eat it. Here’s her first experience with corn straight from the cob.

Why It Matters

A few months ago, I wrote a post about using People First language. Sometimes this is seen as being nit-picky or too politically correct. You’re entitled to your opinion, of course, as I am entitled to mine.

But here’s the thing – there’s a reason this stuff matters. It’s not about being politically correct, it’s about the kind of culture we perpetuate when it’s considered ok to see people only as a diagnosis.

In the news today, there was a story about a Texas high school yearbook in which students who receive special education services were singled out on their own page of the yearbook, referred to as “mentally retarded,” and had some of their diagnoses listed. The news article goes on to quote a student who thought it was “nice” to create a special page just for these students and a district spokeswoman who claims that the students didn’t know the word retarded is offensive. It’s all just a big mistake, according the the article.

I’ll say.

Here’s the thing – the beliefs we hold as a society about disability are so pervasive, so ingrained that this was able to go to print and be distributed before anyone caught on and complained. If there would have been a page that had pictures of students and a list along the lines of “cancer, diabetes, ADHD” …parents, students, and teachers would have gone nuts. You just don’t do that. But a student with a cognitive disability? A student who is blind? Yeah, that’s ok. Pat on the head – isn’t it nice that they were in the yearbook at all?

So pervasive are our attitudes about disability that the people in this scenario don’t even seem to understand the magnitude of the situation. The official statement from the district is that the students didn’t understand that “retarded” is a bad word choice, and that this was all just an “error.” How does a group of high school students in the Facebook and YouTube age not know that “retard” is the wrong word? And how does listing someone’s diagnosis in a yearbook get dismissed as an “oops” akin to a typo? And why is it assumed that “oops, our bad” is an acceptable apology?

At no point does anyone apologize for the real issue – you know, the listing of students’ disabilities alongside their pictures on their own segregated page of the yearbook. That’s the problem – that’s the deeply held, patronizing attitude we have in our country.

We think it’s ok to refer to a diagnosis and not the person. (Still trying to figure out why saying “Rowenna” is somehow harder than “Downs kid.”) We think it’s ok to approach people with disabilities and ask, point-blank, about their disabilities and limitations. (I don’t share my personal health issues with the cashier, why should the cashier have the right to hear about my daughter’s?) We think it is ok to segregate students who require additional supports in the classroom, and pat ourselves on the back when they are “allowed” to eat lunch in the cafeteria or attend art class. (Folks, that’s not inclusion.)

People First language is just one piece of the solution, one step toward bringing these pervasive attitudes to light and dealing with them in a real, meaningful, lasting way.  But there is so much more to do.

Clearly.

Baha’i Faith: Day 14

While I am training to learn more about advocating at the legislative level, there is something I think is even more important when it comes to advocacy. I firmly believe that laws are helpful, but heart change is what it takes to make a lasting impact.

And wouldn’t you know it – the faith agrees with me! (Well, it’s probably better stated that I agree with the faith on this one!)

“Fighting, and the employment of force, even for the right cause, will not bring about good results. The oppressed who have right on their side, must not take that right by force; the evil would continue. Hearts must be changed.”

This gets to the heart of all that makes me bristle about certain subjects in the Down syndrome community. There is a lot of fighting, a lot of “I know better than you,” a lot of “just love your baby enough.”

That is not heart change, and that’s why it will never work.

Right now, there is a lot out there about this awful 90% termination rate of babies who have a prenatal diagnosis of Down syndrome. (Please note that is not 90% of ALL babies with Down syndrome.) And the main drive within the Down syndrome community seems to be a lot of photo montages of our kids being cute set to beautiful music and a whole heck of a lot of what I call “angry blogging.”

Here’s the thing: we need to get real about living this life. Saying our kids are beautiful, while true, doesn’t do much to address the legitimate, real world concerns of families facing this diagnosis. Beauty is great, but when you’re uninsured and staring down a $250,000 open heart surgery, cute just doesn’t cut it. By constantly presenting a cheery face and a beautiful picture, we are guilty of perpetuating a stereotype that most of us hate – that we are strong, stronger than most, sainted in some way. When we get real, when we own up to the things that are hard, we touch hearts.

Angry rhetoric, accusing mothers who choose abortion of “not loving” their children “enough,” and judging women who do choose abortion – those things do not cause heart change. Indeed, they often serve to only strengthen people’s long-held beliefs and opinions.

Heart change is looking a mom who chose abortion straight in the eye and wishing her peace. Heart change is sharing the struggle but also how you worked through it and moved on. Heart change is being genuine, warm, and kind to those that approach the Down syndrome community with questions, who often use uncomfortable phrases for lack of knowing better.

Heart change is softening your own heart, allowing people to see the struggle alongside the joy, and checking your quick judgment by putting yourself into someone’s shoes.

And it’s what we need to do if we want to put a dent in that 90% statistic or expect legislators to understand why policy changes regarding Medicaid, Social Security, and education are important.

Heart change is the key to spreading the message that a life with Down syndrome – or any disability – is genuinely a life worth living.

What Can You Do?

A very dear friend of mine had an interesting interaction at work. She has a framed picture of our two kiddos on her desk and someone came around to ask her about it. That person said it was sad Rowenna has Down syndrome, and my friend told her that it isn’t sad, Rowenna is great. I’m pretty impressed with my friend because it took me a very long time to respond to people with anything resembling composure and tact, and here my friend knocked it out of the park on her first try.

In relating this story to me, she said she didn’t like that people see Rowenna’s diagnosis as something sad. She asked what she could do to help make the world a place where that isn’t the reaction people have when they hear someone has Down syndrome.

I thought that was a very interesting question, and thought I would share my suggestions here, since I know  a lot of Rowenna’s family and friends read the blog and might have the same question. I wish I could say that comments like “that’s sad” or “I’m sorry” are rare, but there are simple things you can do and say.

What can you do, as a family member or friend of Rowenna, to make this world a little better and brighter and loving? In no particular order:

-Believe, firmly and without a shadow of a doubt, that people with disabilities have worth. They are capable and valuable and worthy.

-Recognize people with disabilities as peers. See them as human beings, not as problems to fix. See hearts, see souls.

-See potential in people with disabilities. See different ways of doing things.

-Learn a little about a diagnosis. When someone starts spouting off random “facts” you can share the truth.

-Use People First language and stop using the r-word. You may be surprised at how quickly people pick up on People First language without you ever pointing it out.

-If someone expresses sorrow or an apology over a diagnosis, shrug it off. It’s ok to just say “No need to be sorry, they aren’t.”

 

We’re a very goal-and-benchmark driven society. We have pretty clear boundaries for what is ok, and it’s very clear which things fall in an “other” category. We are afraid of illness, and I think even more afraid of disability.

I never blame people for not knowing what to say, and I don’t blame people for thinking it’s sad that Rowenna has a disability. If you don’t know anything about it, and you don’t live it, and you don’t have the pleasure of being around this little ray of sunshine all day long, it makes sense that hearing about a disability would seem sad.

But what I can do, and what you can do, is promote a culture in which disability doesn’t matter – where disabilities are just different ways of doing things. Yup, it’s a lofty goal.

But we can do it, if we do it together.

Something New

I’m starting a second blog. I’ve been thinking about doing this for a while, but it wasn’t until I finished my first training session for Partners in Policymaking that I decided to go forward.

So, I want to share a short story about what lit my fire for legislative advocacy, and then call it a day for politics on this particular blog.

Last spring, hubby and I attended a town hall meeting about our state’s new budget. There were several community members there who have a disability. There was some concern about cuts to transportation budgets that would essentially render some smaller metro area bus systems completely useless.

A young boy testified about all the ways he uses a bus during the day. Then his father spoke on a similar theme. Both were individuals with some degree of vision loss and relied on the bus for transportation. And then he dropped this ton of bricks on us and I almost got in the car and drove to Madison that second:

He had been told during a hearing at the capital about the same issue that he should just drive to work.

And one of the representatives at our town hall meeting agreed.

That’s when I saw, with extreme clarity, what we were up against. If you are going to tell a man who cannot see to just get in his car and drive, what are you willing to say to a person with a cognitive disability? And what are you willing to do behind that person’s back?

I could go on with a dozen examples of total legislator fail, but that’s not what this blog is for. Garden of My Heart will remain a blog primarily about Rowenna, sometimes about Down syndrome in general, and occasionally about goings-on around our house.

The new blog, Growing a Tree, will focus on advocacy and policy issues. If that’s not your thing, I completely understand! I do hope that you will stick around with us here at Garden of My Heart and continue our journey with us!

That Mom

I found out last week that I’ve been selected for Wisconsin’s Partners in Policymaking program. (a little info here) It’s a 6-month training program to help people with developmental disabilities or family members of people with developmental disabilities be effective communicators and advocates at the legislative level. Graduates of this program have gone on to do anything from organizing a legislative breakfast to being elected to the state legislature.

Gulp.

This is advocacy on an entirely different level than I’ve experienced thus far.

Until now, my advocacy has taken the form of gently suggesting people use people first language, letters to hospital administrators politely asking that their staff not say things like “I had a 17 year old Downs last week” (yuck), and even a conversation with our state assemblyperson over coffee about the concept of “nothing about us without us.” It’s been pretty basic and straight from the heart, with no clear agenda other than “please treat my child like an actual human being and not someone to be patronized or ignored.”

You see, a few weeks after Rowenna was born I made a promise to myself. I promised myself I would not be “that mom.” I didn’t want to be “that mom whose kid has Down syndrome,” the mom who people avoid because they don’t want to hear the latest tirade about some new policy or law or injustice. I didn’t want my life to be consumed by this diagnosis. Just like I want Rowenna to be “Rowenna, who happens to have Down syndrome” I want to be “Melissa, who happens to have a daughter with Down syndrome.”

However, I have a degree in political science, a love of writing, and an incredibly over-developed sense of justice. That’s like the perfect storm for creating a staunch advocate.

As I meet more and more families in the Down syndrome community, I realize that not everyone has the interest or desire to advocate at the government level. I see that every family chooses its battles and the area of legislative involvement is not often chosen. I understand why. It is frustrating and crazy-making and time consuming. If I didn’t already have a degree in political science and a secure understanding of how our legislative system works, it would be daunting, maybe even scary.

On top of that, my state government dumped a pile of legislative nonsense in our laps. I pretty much heard God laughing and shaking his head saying, “You’re not going to advocate? Riiiiight.” I looked at what my state had in store for people with developmental disabilities, looked at Rowenna, and dug in my heels. Nothing about Rowenna, without Rowenna. Until she is able to speak for herself, I intend to be her voice.

I applied for this Partners in Policymaking program as a first step. For me, this goes beyond Republican and Democrat, conservative and liberal. The rights demanded by those with developmental disabilities are rights that help everyone – on both sides of the aisle, of all abilities.

So over the next six months I’ll be thoroughly immersed in the history of disability rights, the ins and outs of public policy, and learning how best to make my voice heard. My goal in it all is to be articulate, patient, and determined without losing my own identity and letting my life revolve solely around advocacy. I still want to be mom, wife, friend, massage therapist, knitter – what have you. I don’t want to be “that mom” and I won’t be “that mom.”

 

Think There’s No Problem?

One of the more…interesting things I’ve come to realize over the last 13 months is there are some people in the world with some…unique views.

I have heard and read people defending the use of the word “retard” and all its various forms. The special needs community is being “too sensitive” when we ask people to just use a different word instead. The English language is a most colorful language. Any language that counts the word “dingleberry”  as one of its many insults surely has a wide range of words to choose from other than “retard.”

Using the word retard or describing something as retarded just shows a plain lack of creativity.

It also shows an obvious disregard for people like my child. It’s pretty easy not to use the word and I’m always a bit confused as to why people insist that they say it when there are so many other words to choose from.

Anyways, I hear a lot of “it’s no big deal” and “not a fight worth fighting” and “we’re being too politically correct.” And while it might seem that way to some people, every now and again something happens that should make it glaringly obvious why the Down syndrome community promotes People First, appropriate language.

A few days ago, GQ magazine published an article online discussing the finer points of Boston’s lack of fashion sense. I cannot link to the original article as it has already been edited, but when describing just how bad Bostonian fashion sense is, the author wrote:

“Due to so much local in-breeding, Boston suffers from a kind of Style Down Syndrome, where a little extra ends up ruining everything.”

Only in a culture where it is still socially acceptable to make the intellectually disabled the brunt of a joke would this have been published. It had to come from the writer’s mind, get typed onto a computer screen, gone over for spelling and grammar errors, be approved by an editor, and ultimately be published online for anyone to read. There were a lot of points when someone could have said “um, maybe this isn’t the best phrase?” Furthermore, if you go into the comments section of the article and the article on the Boston Herald that covered this fine piece of writing, you’ll see people defending their rights to use whatever language they want and saying that the Down syndrome community is “looking” for a problem.

Oh, how I wish I had the time to look for a problem like this. Alas. I’m too busy having fun with my child and living life to go looking for problems. But when I find one, or one is brought to my attention, yes, I’m going to speak out.

So, still think there’s no problem with language in our country? Still think the Down syndrome community is being too sensitive when we ask for certain words not to be used? Writers using my child’s diagnosis as a joke and people defending it? I’d love to hear what these same people would have to say if the sentence said something about “style heart failure” or “style cancer.” Why do people insist that Down syndrome is something that doesn’t need advocacy? Why must we be accused of being the PC Police when we’re only asking for the same respect that everyone else in this country takes for granted?

Oh my, do we still have work to do.

In response to this, Dr. Brian Skotko wrote a great piece for Children’s Hospital of Boston. You can read it here.

A Hard Truth

Something happened last night that I just can’t quite shake.

Actually, two somethings happened.

I’ve said on several occasions that I don’t want my blog to be political, so I’ll keep this first thing short. We went to a state budget hearing hosted by our representatives and I gave a testimony about the importance of special education and later briefly mentioned that any changes to Medicaid should be done with feedback from Medicaid users. There was also testimony from several other people who represent a different part of the disabled community.

It was absolutely heartbreaking to hear the callous replies and know that Rowenna wasn’t really being seen as a person, just a burden. Now, I’ve known for the last 10 months that this attitude was out there. (Read the comments section of any online article pertaining to any sort of disability and you’ll get a pretty good feel for the hatred people feel toward the disabled community.) I thought I had steeled myself for the possibility of someone basically writing Rowenna off – and being willing to do it to my face.

But yet there I was, literally shaking in my shoes to watch my representative completely avoid eye contact with me and blow off my concerns for my child’s future education and current insurance situation because, gosh darn it, we have to balance that budget.

So that was pretty awful to feel for the first time. I was up almost the whole night turning it over and over in my head, wondering what it is about my child that people find to be lacking as a human being and a person unworthy of education and good medical care.

At the same event, a mother of a child with undisclosed special needs testified that the special education and Medicaid systems in our state are full of fraud and the reason why our state has a budget deficit. (Yeah…if the state was spending $3.5 billion on special education I’d have nothing to complain about, but I digress.) She said she thought the state was spending too much money on her child for schooling so…

She put her child in an institution.

My mind is still reeling. I know there is more to this story, but that was what she chose to share with this group of fellow citizens and state representatives – that she had done a cost-benefit analysis on behalf of our state and decided her child would be better in an institution where he wouldn’t waste taxpayer money. I hope beyond hope that there is so much more to that story. Placing your child in an institution is a heart-breaking choice, and I hope beyond hope her decision actually had nothing to do with her cost-benefit analysis.

She came up to us after the event to reiterate her point. She told us to question everything the school tried to provide for Rowenna and told us to turn things down because they were wasteful. It’s hard to imagine a school district “wasting” money on special education. In fact, it is often the first thing that sees cuts.

I learned a hard truth last night. I learned that not all members of the special needs community will work for the betterment of the special needs community. I learned that some will actively work against the good of our community.

It is mind-boggling to me that someone would actively try to roll back what decades of mommas have done before us. It is mind-boggling to me that someone would reduce their child’s care to a financial analysis.

Advocacy already felt like an uphill battle. Now it feels like an absolute mountain. To think that I not only have to turn the hearts of people who have no experience with Down syndrome but I also have to turn the hearts of people who are already walking this path with me…it’s down right demoralizing.

Let me be clear: I completely understand when parents choose not to actively advocate. I know not everyone has the desire to stand up in front of a room full of people, stare down a panel of elected officials, and demand answers. I completely support the choice of a parent to not be a vocal advocate. I firmly believe that the majority of parents advocate in their own way. Not everyone needs to testify.

But what is deeply saddening is the idea that someone would go so far as to work against what advocates have done. It took years for special education and therapy services to reach this point. Our kids need these services and they deserve these services.

So, it’s a hard truth to learn but better now than later, I suppose. Definitely something to think about for a while.