Saturday, March 22, 2014

Haters in Disguise?

I'm feeling discouraged and overwhelmed by the world around me. Do you ever feel that way? 

The family is good. While it's the usual crazy and loud, it's not overwhelming at this point. We are in a good place. 

It's the rest of the world that chaps my hide. I saw on facebook that an old high school friend "liked" this article/video in which Bill Maher says you aren't an environmentalist unless you care about overpopulation. Stupidly, I read the comments which vilified large families like mine for all that is wrong in the world. 
That's why I hate that show about the duggars that glorify over breeding
Agree. Education of women is the best birth control! Get a degree; not a stroller.
Agree. I'm appalled now when I see families with 5 & 6 kids. It's selfish. 
Oh, yes, selfish. That's exactly how I feel when I've been up half the night taking care of sick kids or counseling a teen through a period of angst. Thankfully, my degree did not preclude me from investing in many strollers over the course of my life. I also loved the comments that referred to my large brood as a "litter." Awesome.

And, if it were not enough that people are apparently "appalled" when they see my big family, it appears as if some would like to see at least two of my children outright killed: 
Infanticide may offend our social senses rooted in 2000 years of Christianity, but if you look at cultures throughout history infanticide was largely accepted. The Greeks used to leave their disabled and retarded infants on a hill to die of exposure. 
 In case you, like my high school friend, believe great scientific minds like comedian Bill Maher, here and here is some food for thought about the overpopulation myth. 

I thought about all the pictures I post of my very large family on Facebook. I thought about all the funny statuses I post about life in a big family and about how "out there" I've put us. To know that one of my friends "liked" something that condemns who we are and what we're about made me feel exposed and vulnerable. 

Then I read this article about a mother and son who were jeered out of a movie theater last Christmas. The adult son, Max, is autistic and became frightened during the previews. He became loud and his mom was reminding him of movie theater rules and breaking out the coping tricks that have worked countless times before, when suddenly, the people next to them turned and demanded that she quiet him. She tried to explain, but they would have none of it and when others joined in, she and Max made a hasty exit. The theater erupted in applause and taunts. One of them, "He's retarded!" reverberated in her soul. After reading her blog post about the experience, an acquaintance from church rented out the theater so Max and others with special needs can have a safe place to view the new Muppet movie. 

I read the comments on that article, too. 

My stomach is still churning. 
Bottom line, there is no way for the audience to know what kind of issues he has, and if she would be able to calm him down. They saw a situation developing and reacted to it. Mom, on the other hand knew exactly what she was dealing with, but chose to take him to the movies, instead of waiting for the movie to be released on DVD.
whose to say her "coping" mechanisms would have worked that day? I have seen them fail in situations over and over. All the while the parent of the special kid is trying to keep calm themselves. Bring them to the movies theaters that do special days for those kids.
Clapping because a loud person leaves the theater isn’t cruel. Mom bringing Max there knowing he has a problem being quiet is.
I also know a paraplegic, But I wouldn't think of taking him swimming just so he can be like everyone else.
So "we" paying patrons that don't have a kid with a disability. That pay full price for our tickets. On our date night. Should put up with a loud and obnoxious person? Sorry, but no. The majority of people still out weighs those with issues that cant sit quietly and shut the heck up.
Nevermind that Max didn't actually disrupt the movie. Nevermind that Max's mom didn't even get a chance to employ the coping strategies that have worked in the past. Nevermind that no one simply notified the manager if they were bothered...because they didn't have time. Nevermind that the people in the theater loudly and rudely taunted and jeered him as they applauded his exit. 

According to the commenters, Max and his mom deserved what they got. They should have waited and rented the DVD or gone to a theater that does "special days for those kids." They should've remained isolated and alone or stayed with their own kind. 

Trust me. Staying isolated and alone is so tempting. Especially after getting a glimpse into the heart of your fellow man. In all honesty, it makes me want to hide, too.

I've always known there is ugly out there. People lose their inhibitions behind the anonymity of their computer screens. Apparently, they do under cover of darkness in movie theaters, too. They are free to show who they really are and say what they really think. 

So it begs the question. How many people, how many friends, smile at my family, LOL at my statuses, "like" my pictures, cheer for my boys... but secretly agree with the haters? 

There is nothing I can do about the fact that I have eight children. (Make no mistake. I would change nothing, given the chance. The zero population growth people can bite me.) 

But I have boys with special needs. One of them is very typical, although loud. We are working on that and he will learn the appropriate use of "inside voice." The other is anything but typical. He makes weird noises and vocalizations. He bangs his head on things. He is unpredictable. He thrusts his tongue. He has a strange fascination with shoes. 

Right now, he is small for his age and still cute. But he will get bigger and older and less cute. 

And he will make people uncomfortable. 

I worry that we will stay home and watch DVDs and hide him...because that's what people want us to do. 

I worry that all this advocacy that we do, all this blogging and networking and sharing stories about Down syndrome and disability, I worry that all of it is for nothing. That its only purpose is to make ourselves feel better. To make us feel as if we are accomplishing something. To think that somehow, through our efforts, we can make the world less ugly. 

I worry that people are only humoring us. I worry that those that are smiling are doing so out of relief that they aren't saddled with a kid like ours. I worry that we are pitied for the life that we have chosen. I worry that, for all our exposing ourselves, no one really sees the truth. 

The truth is we are abundantly blessed to have these boys. We delight in the different they bring to our lives. They teach us to slow down and celebrate the small things. Because of them, we learn to weed out the unimportant, to embrace the best, and to breathe in the moment. We learn that we have more patience than we think we do...and then we dig deeper and find even more. They make us laugh and keep us young and give us gray hair, all at the same time. Life is rich and colorful with splashes of gray and scary thrown in for balance. It's more nuanced than it was before. 

And then I realize. 

Truth does not become less true simply because it is not acknowledged. People may not accept my boys, my lifestyle, or my family. They may not believe me when I say that life is good. But, their attitude toward my life doesn't diminish my truth. 

I still get to live it.

I know that we will encounter haters in life and some of them will not be hiding behind a computer screen. I can't live wondering if everyone I meet is on my side or not. I don't have the emotional energy for it. Honestly, most days, it really doesn't matter.

So yesterday, on World Down Syndrome Day, I wore my crazy socks and proudly paraded one of my boys around when he came to deliver blue and yellow cupcakes to my work friends. 

And I tried not to wonder if my smiling co-workers are really haters in disguise.

Monday, March 10, 2014

An Apology

I need to apologize. 

In my last post, An Open Letter to Matt Walsh, I made an assumption. Nevermind that I simply parroted an assumption that Matt made first. 

I wrote:

It is very probable that if a business refused to serve someone who is gay or someone based on their color, word would spread and that business wouldn't last long. 

I fully believed that to be true when I wrote it. It seemed ludicrous to me to think otherwise. In my very straight, very white world I believe the best of people because I've never experienced anything different. 

My reasoning was as follows:

I would stand up for someone who was mistreated based on skin color or sexual identity, therefore everyone would. 

I have seen black people and gay people treated fairly, therefore they are always treated fairly. 

It wasn't until someone commented on my post and used my faulty logic back on me that my eyes were opened to what I had done. 

There are some you tube videos of diners standing up for an autistic child. It was an experiment done. The answers may surprise you, but public sentiment may actually be on the side of the disabled.

I scoffed when I read it. "Oh, a you tube video? Well there's proof right there against the myth of discrimination! Let's completely disregard the experiences of people who are actually living it, and throw out the law."

This person assumed that public sentiment might actually be on the side of the disabled because of something they saw. They have no idea what it is like to live with disability, day in and day out. 

And then it hit me.

I have no idea what life is like in someone else's shoes, either. 

My assumption was based on the idea that discrimination against certain groups is so frowned upon by the general public that it doesn't actually happen that much anymore. 

Yeah, I know. (Did I mention my world is very straight and very white?) 

I cannot pretend to know that a business owner would be shut down for discriminating against a gay person or someone of color. I cannot pretend to know anything, really, about either group because I don't live it. 

These are shoes in which I have not walked. 

So, I apologize for my assumptions. I'm sorry I presented them as fact. 

Feel free to comment and share your experiences. Let me try on your shoes, if only for a moment. 

Thursday, March 6, 2014

An Open Letter to Matt Walsh

Dear Matt,

Can I call you Matt? I feel like I can. I've been reading your blog for awhile now. So many of your posts make me want to stand up and cheer. One of my favorites was I've been divorced four times, but homosexuals are the ones destroying marriage. That was brilliant and I was so glad somebody finally said it out loud. Your recent posts on marriage and public schools have been laudable, as well.

Last night, I was catching up and I read your post about letting businesses refuse services to anyone at any time. Honestly, it resonated with me and I read it to my husband, too. I'm all for making the government smaller. My husband was a small business owner for several years. Autonomy in business decisions was important to him during that time.

I admit to an initial hesitation about what could go wrong with that idea. But then I read your example of a business owner hanging a sign stating "no blacks allowed". You said the market would punish him, and he would be out of business by Wednesday. It made perfect sense. Of course. No one would stand for such behavior in this day and age. 

It sounds so reasonable. It is very probable that if a business refused to serve someone who is gay or someone based on their color, word would spread and that business wouldn't last long. 

But I'm a mother of two young sons with special needs and something kept niggling in the back of my mind. I'm not very quick on my feet. Ideas need time to percolate for me. The more I think about your post, the more certain I am that I cannot agree with you, this time. 

You said, "Don't worry. I've heard every outrageous hypothetical." Well, I can't help but lay another one on you. Only I don't think it's outrageous, at all. In fact, I think it's highly probable. 

Let's pretend there was a young man with a cognitive disability and some physical limitations that make it difficult for him to control his movements. He is having dinner with his family in a local restaurant. Not wanting to disturb the other patrons, the family requests a table in the back, but are seated in the middle of the room, instead. The young man uses a bib and is doing the best he can with the spoon, but is making a colossal mess with his dinner. As food particles fall back out of his mouth, other diners can't help but notice as he also talks loudly and his garbled speech draws attention. Someone complains and, in the middle of the meal, the owner of the establishment orders the server to box up the remainder of the family's food and rudely tells them people like their son are not welcome in his restaurant. 

The family is angry, to be sure, but mostly they are profoundly embarrassed and overwhelmingly tired, as this is just the latest in a long line of injustices. 

Unlike in your example, though, the market will not take care of this business owner. The other patrons are simply... relieved. They had been uncomfortable witnessing the young man with special needs and it is a much more pleasant dining experience without him in their visual field. 

You said:
The social movement — not any bureaucratic decree — is what heralded in the era of racial equality. The lunch counters at Woolworths weren’t desegregated by law; they were desegregated in 1960 when courageous young black Americans staged a sit-in. The Montgomery Bus Boycott marked the beginning of the end of segregation on busses [sic], and that had nothing to do with any law or governmental initiative.
Society gave us civil rights. People. Private individuals. Marches. Protests. Sit-ins. Civil disobedience. The tide was turned by free people; the government simply rode the wave. And, in so doing, they caused more problems than they solved. As usual.

You know what gave rights to people with disabilities, Matt? The law. The tide was turned by the law. Parents, self-advocates, and professionals came together and advocated tirelessly to have the law changed to allow people with disabilities included in civil rights legislation. And it was a long and hard-fought battle. Public sentiment was not on their side. 

It still isn't. 

The law is what allows that young man to have dinner out with his family. The law is what allows my friend, a wheelchair user, access into businesses to do her shopping. The law is what will allow my son to go to kindergarten and be included with his peers next year. 

It's The Americans with Disabilities Act, and not a tide of free people, that ensures these individuals can live without discrimination.

See, there are still segments of the population that do need to be protected. I've been to countries without laws to protect them and I didn't see a soul with a disability. I know why. People with disabilities are hidden away. Babies with special needs are abandoned and left to rot in institutions. How can a parent keep them knowing they would be ostracized everywhere they went?

Without laws to govern behavior toward those with disabilities, life would be infinitely harder for them than it already is. Public sentiment is not behind us, still. If you have any doubt about that you need only look at the wrongful birth law suits or the high rates of termination for Down syndrome pregnancies. Society does not want to be bothered with imperfection. It certainly doesn't want to make accommodations for it, or interact with it, or dine with it.  

People don't want to see my friend, Andrea, feed her daughter through a tube in a diner any more than they want their "genius" five-year-old to be slowed down by my son with a cognitive disability in the classroom. They don't want to have to bypass a handicapped parking spot nor do business owners want to be inconvenienced by putting in a ramp for wheelchair users.

But Andrea's daughter has a right to be fed with the rest of her family. My son has a right to be educated alongside his typical peers. Wheelchair users have a right to accessibility. I assure you these rights will not be "taken care of by private individuals," as you assert. 

People don't care. 

Oh, sure. People with special needs are good for inspiration porn. We'll put them on a meme with some kind of positive quote or elect them prom king to make ourselves feel good. 
But we don't really care about the underdog. 

We care about our own rights, or perceived rights. The extensive history of exclusion and discrimination against those with disabilities is proof of that. The pervasiveness of the r-word is proof of it, too. 

People with disabilities need the law to protect them from discrimination. I wish, with everything that is in me, that they did not. I wish that they could be seen as equals, as peers, as fully human. I really believe, for the sake of my boys, that one day it will happen. We in the disability community are working hard to make that a reality. 

But until then, all we have is the law.

And the law does not allow a business owner to refuse service to my sons. 

And, I'm sorry, Matt, but for that I cannot be anything but grateful. 


Tara Lakes