Friday, June 25, 2010

Second Class Citizen


"Energize the limp hands, strengthen the rubbery knees. Tell fearful souls, 'Courage! Take heart! God is here, right here, on his way to put things right and redress all wrongs. He's on his way! He'll save you!'" (Isaiah 35:3-4, MSG)

I think one of the hardest things about having a child with special needs is when people treat you like a second class citizen. The stark difference between benefactor and patient slapped me across the face with such force when our son was born, and it's a story worth sharing.

Because I have two nephews with severe hemophilia, I had been an active volunteer and benefactor in the bleeding disorders community for over a decade before our son was born. We attended gala balls, were wined and dined on yachts or at private parties. We had the ear of key people in the community. But the drastic change in behavior of one key individual when our son was diagnosed with hemophilia himself completely shocked us. We were no longer treated warmly by that person because we were now... a patient! I won't go into all the unkind things that took place, but it was shocking to us. In fact, it even resulted in a sabbatical from volunteering for a few years.

While awful, this is just a caricature of what seems to happen to families when there is a diagnosis of their child. Whether it is the condescending treatment by a doctor or the heavy judgment of a neighbor, we can find ourselves being demeaned in a variety of ways. Even those who are supposed to be raising funds in our names and our children's names have been known to address us as "you people". And getting the schools to comply with the law almost always puts us in an "us/them" struggle.

It's so easy to get discouraged! I hate being treated like we're just a dumb patient or dumb parent who is worried about nothing. I loathe being made to feel like I have to grovel to get the aid we need to care for our son. And I still grieve the friends I've lost because they can't handle the chaos or abnormality of the life we live.

What a blessing it would be to be treated with comfort and compassion instead of insults and exclusion! While the wider world may not have the heart for our community, this is something that we can provide to each other. The value of connecting goes far beyond sharing a simple resource. We have a place where we don't have to feel like a second class citizen. We've all redefined "normal" in our lives -- if there actually is any such thing! We have some idea of what it's like to walk a mile in each others shoes. We don't have to explain ourselves or feel like people are judging us. There is empathy for what we are enduring.

That support we can gain from each other in a hostile world is just one expression of God's care for us. We can feel strengthened knowing that when the world is unjust, He is on our side! The Lord loves "the least of these" and wants the world to do the same. Nevertheless, this is a sinful, fallen world, and we are only passing through here. Being mindful of that often keeps me going. I know that when I stand before God all wrongs will be set right. And I praise Him because I am "fearfully and wonderfully made" in His image! I'm NOT a second class citizen, neither are my children. He gives me infinite value, and those who treat us otherwise are nothing but fools.

2 comments:

  1. "...those who treat us otherwise are nothing but fools." Thank you for writing the words that so many of us think each and every day, due to dealing with said "fools"! We should never have to strugglea gainst them, whether it be for respect, or for our inalienable rights.

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  2. Hi Barb,
    Yes, to some degree we do experience this treatment. One time a neighbor totally humiliated me by sternly telling me in front of all the others gathered in his yard that he did NOT want me to let me son wander in his house again! Another way I've felt a sting is that we are never invited into people's home unless they, too, have a child with special needs.
    But in spite of these treatments, we are called to rise above and show the Grace of God. That is what I try to do. Not always easy.:)
    Thank you for your blog and reading mine too!

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