Tuesday, October 23, 2012

What My Son Will Teach Me

Today I read an article that made me so angry that I almost threw up.

Last night, a certain political tongue demon, who for some reason still has a channel through which to broadcast her toxic and outright false views, referred to the sitting President of the United States as a "retard."

"Retard" has been considered a pejorative term in America for decades.  My siblings and I were raised never to use it to refer to ANYONE, let alone the leader of our country.  This headline-chaser's casual tossing around of this slur is pathetic and shameful.  When I hear someone use it in conversation nowadays, I am happy to observe that, by and large, the people around them no longer laugh it off or consider it acceptable.  Whether it's the casually admonishing "Hey, not cool," or the more forthright, "That's offensive," people are calling out on use of the r-word.

As a society, we seem to be moving blessedly closer to acknowledging that a person with intellectual disabilities is a PERSON, first and foremost, just like anyone else, and that any disability or condition is but a single descriptor, not a definition of who they are.  For example, a person shouldn't refer to a child with Down Syndrome as a "Downs child," any more than they would introduce someone fighting breast cancer as "my cancer friend," or someone who went through a divorce as "my divorced aunt."  We shouldn't treat people as though the footnotes of their lives are titles.

This issue, and this caustic pundit's despicable choice of language, may be hitting closer to home for me than it would have a few months ago.  You see, about nine weeks ago my husband and I found out that our son Joshua, the precious and strong baby who kicks me a hundred times a day, will be born with Down Syndrome.

It was news we never expected.  My age-related risk of bearing a child with Down Syndrome was about 1 in 1000.  We had had no idea, yet every single second since his creation, Joshua's cells had added an extra chromosome.

I admit that our first response, aside from disbelief, was a feeling of grief--loss of the future we had imagined, without even realizing it, for our son.  I had already compiled a subconscious scrapbook of his young life, full of swim meets, piano lessons, football games, prom dates, college visits, ANYTHING he wanted...  The feeling of loss was not for us, but for him.  I prayed desperately, feverishly: What kind of life would Joshua be able to lead, and how could we possibly give him every opportunity he deserved?

We should have known better.  The night after we found out, as we were lying in bed and trying to fall asleep, David and I were comforted by the realization that a few things wouldn't change.  Joshua's bedroom would still be across the hall in a warm, comfy house in a safe neighborhood.  He would still have an adoring pet dog to cuddle.  His mother would still sing to him, and his father would still take him camping.  His extended family of grandparents, aunts, uncles, and cousins would still dote on him from Day 1.  Many things might end up differently than we had expected, but most things--the IMPORTANT things--would stay just the same.

A meeting with a representative from the Down Syndrome Center of Pittsburgh confirmed this new outlook; she told us more than we could have ever hoped for about the possibilities for Joshua's future.  There are early intervention therapies provided at no cost to us, to give him every developmental opportunity from infancy onward!  There are sports leagues!  There are overnight camps!  There are horseback riding lessons, music lessons, martial arts classes, gymnastics teams, art classes--ANYTHING he might want.  And Joshua's health care should be permanently covered by Medicaid, giving him the chance to live a long, happy, productive life.  Just like everyone else.

No.

Just like him.  Just the life he was made to live.

Another realization sunk in pretty quickly, too.  One of the first things my mother said to me when I called her to confirm the diagnosis was, "He is going to teach us all so much more than we'd ever expect."  At the time I almost couldn't process those words.  I was still hung up on how on earth we were going to teach Joshua--how we were going to help him learn enough to live his life.  But soon afterward, especially as I read accounts of other parents with children who have Down Syndrome, it started to make more sense.  Though we have no way of predicting the so-called "severity" of Down Syndrome, the odds are that Joshua will be intellectually disabled, and that he will see the world in a different way than his loved ones do.  But that will NOT mean he's seeing it wrong.  It will mean that we are privileged to his unique viewpoint on life.  It might mean that my son will see a forest when I see only trees.  And he will teach me to see the world differently.  My life will be richer and have greater perspective because of him.

I have been meaning to share this news for several weeks and just wasn't able to find the words.  The sickening news article I read this morning catalyzed the need for me to find them.  This is because there is another important lesson my son will teach me:

I have largely tried to spend my life as a peacemaker and finder of common ground, and I like to think this kind of moderate approach has served well--I rarely offend, and I often find agreement.  But sometimes I don't speak up when I should.

That is a luxury I cannot afford any longer.  There are people who may not understand or appreciate Joshua, and it will be his family's responsibility, most of all his parents', to be his fiercest and strongest advocates to the world.  I need to learn to speak up, to call out, and to raise my voice when my son needs it.  I may need to be louder than I feel comfortable being.  I will need to be his constant advocate against discrimination, cruelty, and injustice.  I will need to champion him every day.  NOT because Joshua will be helpless, but because he deserves it.  If the dozens of daily kicks I take to the belly are any indication, my son will be a fighter.  He deserves a mother who will fight for him, too.

And so, to return to the beginning of this post, to the pundit who called our President a "retard":

Shame on you.

Who on God's green earth raised you to speak this way about people?

Who taught you that this is an acceptable way to promote your stagnating career?  Your continued presence in the political and news media is nothing short of a tragedy in American culture.  You sow only unkindness, and I don't envy the harvest you will ultimately reap.

I haven't used your name once in this post because you don't deserve a name-drop in the same zip code as my son, let alone the same webpage.  He may be born with severe intellectual disabilities, but I'll take them any day of the week over a stunted, disabled soul like the one you've publicly shown our nation.

Towards you I have felt disgust, nausea, and something dangerously close to hatred... but then I think of Joshua, and I feel only pity.  I will not raise my son to hate.  I will not raise him to use words as weapons.  I will not raise him to be like you.

My unborn son has already taught me a lot, and I still have a lifetime of lessons to learn from him.

Clearly, so do you.

"Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that." 
- Martin Luther King, Jr.

4 comments:

  1. Thank you for sharing your dreams and possibilities for what the future holds for Joshua and your family. Your honesty, passion, and thoughtfulness moved me beyond words. We have so much to learn. Can't wait to meet him and celebrate his arrival!

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  2. Thank you so much, Amy. I can't wait for him to meet the whole big, loving Fisher family!

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  3. Wow. I have always worked with children with a range of different needs and gained a tremendous amount of humility through seeing and helping them achieve beyond what others may have expected of them. This has enriched my life and I can think of no better way to spend my time which is why I choose to work in this field. I would like to say I think Joshua is so lucky to have you as his mother and I know you will do an amazing job. I am among other things a piano teacher and music therapist. I live in New Zealand though if I lived closer I would of course love to meet you and your family and Joshua. I love sharing the joy of music with others and I would never exclude anyone for any reason. Good on you, I wish you all the best. Angela. ps. Reading and commenting on blogs is in no way a regular pastime for me, only occasionally am i moved to do so :)

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  4. Thank you for writing this and expressing some of the hurt the families of those with special needs feel when those individuals - who still have feelings, agency, love, dreams, and families - are lumped into a category and used as a negative slur. A member of my family was mentally disabled, and sadly he died this year. Looking back on his life we all remembered how much he had taught us about what it means to be a family, and we knew that life somehow could not have played out any other way than it did. You will learn so much from your son that you never knew you didn't know! :)

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