advocacy · autism · Down syndrome

Retarded.

There’s a sting I feel when that word is said. A jump in the blood in my veins. Because, for me, that word carries a weight. It reminds me of my children. It shows that even still, this world is not considerate of them, and what’s more, can be downright cruel.

Retarded.

The word used as slang bothers me. What’s worse for me though, is that it seems to not bother the people who use it. They throw it out in every day language as if it carried the same meaning as words like “goofball” and “sillypants.”  It’s not the same.

Down syndrome and Autism, Spread the Word to End the word

This is why. These are my kids. The word ‘retard’ in all of it’s forms is built upon a framework of the ugliest parts of disability.  It shows how, again and again, the disabled are the last to be treated like equals. Other derogatory terms are publicly decried from within the community that the word is offensive to and from without. Words like “faggot” and “nigger” are bleeped out on TV, as is completely necessary, but you’ll still see your favorite TV host using “retard” or “****tard” or something of the like without batting an eye.  And sure, they’ll hear it from the disability community, maybe even issue a one line apology on twitter, but that’s all.

The word “retarded” needs to go away. But I’m not crazy enough to say that it will. Like any word, no matter how ugly, people are still going to use it. What I want, at least for now, is for people who use it to understand the weight that it carries.  If you’re going to throw out that word in casual conversation, I want you and everyone around you to know that using it makes you look ugly, small, and completely socially unaware. Just the way anyone would if someone threw out any of the recognized socially disgusting words, a few I’ve mentioned above.  I want gasps to echo the same way as if you had used the n-word or others of the like, in place of ‘retard.’ Because THAT is the same.

The word retard, as I’ve said a million times before, uses my children and all that they endure, as a vehicle for your petty insult.  Because when you say that you’re acting retarded, you’re comparing yourself to my child. You’re saying that you’re stooping down to their level.  You can say you never saw it that way, that it’s just a word, but if you’re reading this, now you can’t. You now know better, so you can do better. You can be better. And the next time someone around you says something of the same, you can stand and gape at them in shock that they’d stoop so low as to devalue the lives of people who a great deal of the time cannot defend themselves in order to get a laugh.  And it can spread this way. You can help me by just understanding that this word carries weight, born by the people with the disabilities themselves, and to let your friends know that it’s not okay to use around you.   It’s the simplest things that can create the biggest change.

Abby · advocacy · Down syndrome

My Message Was Lost With My Words

Whether you believe it or not, I choose my words carefully on this blog. I wrote two posts about abortion and Down syndrome. The first post I wrote on in two years ago was my first post to ever go ‘viral’. It was read and shared by people who believed exactly as I do. I patted myself on the back and thought that I was really getting the message about choosing life with Down syndrome out there.  That my words were making a difference.

A funny thing began to happen. I watched as people would land on this blog using search terms like “Should I abort Downs syndrome baby?” and “Prenatal Down syndrome abortion.” A couple of times, I watched where they went on my blog. They came, they read for a minute or two, they left and never came back.  They read the words and were turned away from the real message. I know from speaking to one person who came to me worried about keeping her pregnancy with a baby with Down syndrome that my words in those posts were harsh and shut down the conversation. They didn’t allow space for someone who really wanted to see what life is like for our family and to poke around to know the reality.

My message was lost in my words.

I find myself getting offended at the very thought that someone wouldn’t want a child like Abby, and that leads me to say things in ways that shut down conversations. It makes me an asshole, not an advocate. At the end of the day, my views on it really won’t make as much difference, I think, as just being open and honest about our lives. People are going to make whatever choice they are going to make, and with anything, it’s not my place to condemn them. What I want is for people to see how good life really is for Abby, even if it’s not always easy.  I want people to STAY on my blog to see that if someone like me can handle the things on my plate (albeit poorly at times…lots of times) that they can, too.

I want people to know the facts, both good and otherwise, about life with Down syndrome. Research shows that doctors aren’t trained in delivering such a message to expectant mothers, and a great deal of the time, they give information that is outdated or downright wrong. If you want to learn the facts about Down syndrome, I HIGHLY suggest you go to this site and order or download a copy of Understanding A Down Syndrome Diagnosis. It’s free.

If you’re here because you’ve been given the news that the baby you carry has an extra chromosome and need someone to talk to, feel free to contact me. I beg you to read on. To see the good, to know what to expect of the hard, and to know that you’re not alone.

advocacy

What DID Jesus do?

Today, the US Supreme Court overturned the Defense of Marriage and left the Prop 8 decision to the lower court- which had said it was unconstitutional. I excitedly posted my support on my Facebook page, and a conversation ensued. I know everyone doesn’t agree with me. I know that from comments I get on this blog and emails I’m still receiving concerning my immortal soul. How dare I not support God? How dare I write in support of equality? What would Jesus think?

I don’t know.  But I can tell you what I know from His life. What I know from the Jesus in the New Testament.

He chose love above rules.  In fact, time and time again, he defied the very rules that the Sadducees and Pharisees had based their own holiness on.  He loved the people more than he loved the traditional law. While the religious leaders of the time were quick to condemn, he was even quicker to have compassion.

He had empathy for others.  When Lazarus died, Jesus wept with Mary and Martha. Why? He knew he would soon raise Lazarus. Why then would he weep? My belief is because he felt what they felt, he had sorrow for their sorrow. He bore their grief with them.

He believed all people were equal. In the time of Jesus, women had little place in the church. Yet, his followers were both men and women. He used the Samaritan woman at the well to deliver the message to her people.  After his resurrection, Jesus appeared first to Mary, a woman whose testimony would not have been accepted as competent in the courts of the time based only on her gender.  When the disciples saw children approaching Jesus they tried to send them away. Jesus rebuked the disciples and spent real time with children. All were equal to him.

He lived a life of service- to all people. Jesus was not found with just people who were of higher status. No, he spent his time with the poor, the sick, the sinner. He lived a life of service to all people, not just to people who believed as he did.

He was accepting. At the time, people who were sick or disabled were often looked down upon, even stigmatized as “sinners.”  When he healed the sick, he used the term that they were now “whole,” meaning that he not only healed their physical infirmities, but healed them socially, physically and emotionally.  He removed the stigma of disability being a result of sin, either by the parents of the person or the individual themselves.  In so doing, he showed a great acceptance to people who in that day were thought of as less. (I should qualify this here in saying that I do not believe homosexuality is a disability or something to be healed from. I gave this example to show how he treated those that society had shunned.)

He was merciful. In an effort to trap Jesus, the Pharisees and scribes brought a woman caught in the very act of adultery.  The Law of Moses required her to be stoned to death, but Roman law prevented such a thing.  Jesus simply said, “He that is without sin among you, let him first cast a stone at her.” The people left, leaving him with the woman. “Woman, where are those thine accusers? hath no man condemned thee? She said, No man, Lord. And Jesus said unto her, Neither do I condemn thee: go, and sin no more.”  Jesus, the very judge of us all, did not condemn her.

I don’t know what Jesus would say about marriage equality.  I do know by his character that he loved people first. That he cared more about the heart of the man. “The Lord seeth not as man seeth; for man looketh on the outward appearance, but the Lord looketh on the heart.”  Even if you don’t believe as I do, are your actions consistent with who you say you follow? Do they show that you really know Christ?

Not everyone that saith unto me, Lord, Lord, shall enter into the Kingdom of heaven; but he that doeth the will of my Father which is in heaven.

Many will say unto me in that day, Lord, Lord, have we not prophesied in thy name? and in thy name have we cast out devils? and in thy name done many wonderful works?

And then I will profess unto them, I never knew you: depart from me, ye that work iniquity.

– Matthew 7:21

Or do your actions cast judgment on those who you believe are sinners? Do they make them feel unwelcome and unloved? You don’t have to believe that they are worthy, but you are obligated to follow the commandments of the man who you take the name of- “A new commandment I give unto you, That ye love one another; as I have loved you.”

advocacy · Me

Rhode Island Marriage Equality

As I walked up to tRhode Island State House on March 21he Rhode Island State House I took a minute to catch my breath. The building is beautiful. I marveled at how quiet it was outside.  I was pretty much alone. I looked up at the building as I tried to steady myself. The quietness outside, the peace I felt, I knew would soon dissipate. I could hear the yelling from inside the building.

In fact, I had already spent hours inside, holding a sign, and singing with people on both sides of the marriage equality debate. For a minute, it wasn’t quite peaceable, but it wasn’t angry either. In fact, I laughed at a lady standing behind me holding a “Equal Marriage” who introduced herself to a man carrying a sign in opposition. They shook hands and she she said, “It’s a pleasure to be protesting with you today!”  We sang patriotic songs, and the protesters sang along with us. They sang hymns, and we sang along with them. For a minute, for a very sweet minute, even though we disagreed, things were okay.

Protests in the Rotunda of the Rhode Island State House for the Senate Judiciary HearingSadly, it did not last. The screaming intensified. There soon began jabs and shouts of misconstrued Bible verses. There were condemnations to hell. I felt my heart start to squeeze. Being someone that hates crowds and contention anyways, I decided that it was a good time to ditch my laptop I’d been lugging around all day and feed the meter. I spent a minute in the stillness of the car, wondering what the hell I was doing there. I’m a straight, Mormon, mother of four kids. I can count the number of gay friends I have on one hand. Why on earth did I feel so strongly about this? It had cost me a lot. My faith, some of my friends, and it’s meddled with relationships with people I love most. Why haven’t I been able to just shove that feeling down…why have I felt so compelled to act?  I have been dealing with  a crazy spell of fatigue lately, too. I was so tired. I put my head back for a minute on the seat and thought about just. driving. home. Getting into bed. Cuddling up with my husband.

Marriage Equality
Taken while we were hunkered down in the hurricane

My husband. The man I married just months after I had turned 19. No one stopped us. There were no hoops to jump through, no “separate but equal” civil union for us. We were in love. We wanted to spend forever with each other. We got married. I love being married. I say that a lot. These last few moths have been trying, to say the least. Abby’s surgery and the news of further surgeries needed and her hearing loss being permanent. Lance was told he is to be furloughed  at the end of April because of these budget cutbacks- he will have to stay home one day a week without pay. A fifth of our salary right out the window.  I think about how much weight I carry around, how much worry weighs shoulders. My marriage takes that weight and divides it. It softens the blow of trials hurled at us. Along with that, my marriage intensifies joys. At the end of the day, when I am being swallowed up in Lance’s arms, I am calm. I am happy.  I am grateful.

Thinking about that joy, I knew I had to go back in. How could I deny that to anyone? How could I not support more of the very thing in my life that makes me so happy?

I took a deep breath as I opened the large doors to the capital building. It took me a minute to get my bearings. The heavy doors muffled most of the sound. Things had gone from bad to worse. This is what I was greeted with:


Inside the rotunda the sound of the protests drowned out the efforts of the LGBT and supporters as they tried to sing songs. I heard the worst things said to these people. That they were evil. That they were trying to ruin society. The list goes on and on. At one point I burst into tears. A woman who was there with her partner came and wrapped her arms around me. I told her I was so sorry. That I was so sad that she had to deal with this. I sobbed about how wrong it is and she just hugged me and said, “It’s okay. It’s okay. Thank you for being here for me. Thank you for caring.” Me. She was worried about ME. I’m straight. I don’t have to deal with people telling me I’m an abomination because of how I was born.   I watched as the supporters resolve started to crack a little because even when we tried to together sing as loud as we possibly could, “God bless America, land that I love…” we still could not be heard over the yells of “No! NO! NO!” of the protestors.  We were so outnumbered.

The people who had come with their children had left some time before. I heard one mom talking to her daughter. Her daughter said, “I thought this was supposed to be a special day.” The mother, “It is a special day. But some people just weren’t being very nice.” The girl,  “I don’t like it when people aren’t very nice.”

Eventually, things got too out of hand, and we were moved to a holding room upstairs.  Exhausted and a little defeated, I found a seat next to some ladies who brightly spoke about their business, the years they’ve been together and how excited they were to just one day get married. We listened to the testimonies that were given on both sides.  I watched as the supporters visibly cringed when they were compared to people who practice bestiality and pedophiles. The room exploded into cheers when Matthew, a 13 year old boy, gave an articulate and impassioned plea to let his parents get married.

IMG_0146After about 9 hours there, I was too tired to go on. I started to feel sick to my stomach and sent a text to David, the man I had been working with on my testimony. I went and met him, took a couple of pictures in front of the hearing. I apologized for not being able to stay, and he hugged me and thanked me over and over again for my support. He said they’d deliver my written testimony to the committee and that we’d be in contact. The people working there had been there since early that morning and were going on zero sleep. Yet, even at 11pm, they still met me with smiles on their faces.

The snow softly breezed around me as I walked to my car. In my mind, the song, “Hallelujah” played. The song speaks of David and Samson’s fall from grace. It speaks of sin and of love. Then…

You say I took the name in vain
I don’t even know the name
But if I did, well really, what’s it to you?
There’s a blaze of light
In every word
It doesn’t matter which you heard
The holy or the broken hallelujah

Hallelujah, hallelujah
Hallelujah, hallelujah

I did my best, it wasn’t much
I couldn’t feel, so I tried to touch
I’ve told the truth, I didn’t come to fool you
And even though
It all went wrong
I’ll stand before the lord of song
With nothing on my tongue but hallelujah

In the end, many on both sides thought they were doing God’s work. I feel strongly that my life has brought me here. Maybe it’s having a marriage that I love so much. Maybe it’s having kids that aren’t always treated equally because of who they were when they were born.  In the end, whether you hear me singing a holy or broken Hallelujah, know that I’m still singing it.

And know, that whatever side you are on with this issue, kindness lasts longer and goes much further than anger. I wonder how it would have been if the protestors just kept singing with us, and us with them. I know with a surety that in their efforts to protect marriage as they see it, they did nothing to bring people closer to the God they believe in. As I sobbed amidst the crowd, I kept thinking, “This is not the God I know. This is not the God that I was taught about. If it were, I would have nothing to do with him. But it’s not. The God I know is tender and loves everyone. The God I know cares for all of his children.” They did nothing to make the LGBT community feel loved and accepted. It didn’t have to be that way. It could have been kind. It could have been spiritual. The same testimonies could have been shared in front of the committee. No one would have had to compromise their beliefs. But no one would have had to leave there feeling so broken.

I got home and cried into my husband’s chest until I fell asleep. I fell asleep grateful for my marriage in a whole new way. It was so easy.  We fell in love, we got married. The people I had spent the entire day only want the same. I want that for them, too.