Special-Needs Adults

So, how about this weather? There are so many complex factors in weather, and in climate, that you can’t predict a scorching July will follow cherry blossoms in March. That goes double for Rhode Island, where it can snow in May.

Friday, I walked to Kennedy Plaza to catch the #42 bus. They say you have to watch out when you’re downtown, and they’re right. At Burnside Park I was confronted by a Unitarian who gave me a pledge card. With my sore back I’m not up for running, so I just told her that I hope to make good on last year’s pledge by the end of this fiscal year. I’m streetwise like that.

I just watched HBO’s ‘Game Change’. In 2008 I saw Sarah Palin’s acceptance speech in real time, it’s fascinating to see it as drama. I feel a kinship with Sarah Palin. Really.

Like when the wonks are in a huddle and someone mentions that Sarah Palin speaks in tongues. That’s fact, she does. I know why. I’ve been there and done that. At Apponaug Pentecostal Church in the 70′s, everyone who was anyone spoke in tongues. Though actually I had learned tonguesspeak from the Catholic Charismatics– long story.

I know that Sarah Palin has a large and powerful base. In my prior job I worked with an office manager who looked at me innocently and said, “I really like Sarah Palin, don’t you?” I would not hurt this woman’s feelings for the world, she was the nicest person. I wondered what she was hearing that made her feel Sarah Palin would stick up for her. Sarah Palin is not stupid– in fact she is brilliant at connecting with the pain of some Americans who feel ignored and disparaged, and making them believe that she is on their side– without actually committing to take any material action on their behalf.

In the film, a woman holding a Down Syndrome child looks worshipfully at Palin, saying that finally someone speaks for her. This is a part of America that cannot be dismissed, and to make snap judgements or condescend is not only wrong, it’s stupid.

Parents and families of special-needs children are fortunate if, like the Palin family, they are wealthy. Most are not. Where it really matters is not at the political rally, but in the allocation of resources. Tax cuts for the rich at the expense of families who depend on such services as RIDE and SNAP are dry, depressing, uninspiring realities. Jesus said that when you give, don’t let the right hand know what the left hand is doing. The Republican Party seems to have applied this to taking– talking about the children while cutting aid to the families who care for them.

Special-needs children, gods willing, grow up. Their needs change, sometimes increase. Parents grow old, money runs out. We can take care of our own, if ‘we’ includes all of us. We can provide not only material care, but inclusion.

I once worked in a building that was considered rather tough. At one time the VNA would not go into it without an escort. More than one mother with a special-needs child lived there, including the aging mother of a woman I’ll call ‘Tonie’.

Tonie was sweet-natured, energetic, outgoing and childlike. She hugged everyone. Her mental handicap was not apparent unless you talked with her. Wariness did not seem to be part of her nature. She was slim, boyish and nice looking. Her mother protected her always, until she had a heart attack.

While her mother was in the hospital, Tonie had to spend a long weekend on her own. We all worried. Did she know how to cook without setting her apartment on fire? Would she know to stay away from some of the known predatory people, inside and outside her building?

Tonie had more strength, I think, than we gave her credit for. She did okay, and I see her from time to time. She was not the only vulnerable person in that building who seemed to be protected by an unspoken code of honor. There were some tiny elderly ladies and gentlemen who lived there as long as age allowed. There were people whose illness caused them to be unpleasant and provocative, who were understood as impaired and left alone.

This rambling post is just to mention something that is obvious but often overlooked. Margaret Thatcher supposedly said that there’s no such thing as society– only individuals. We do not, however, live entirely in a world of strife and competition. We want someone to speak for special-needs children. Less often does anyone speak for their needs when they become adults.

We can take care of our own– all Americans. We are a great and wealthy nation. Special-needs children, like all children, are a lifetime commitment and beyond. They grow up, parents age, families reach the limit of their resources. That’s where community, and government aided by good laws, share the responsibility.

We are now at a point where we will decide whether the life-saving resource of medical care will be a public good, or a private privilege.

The future of Mary Beck, Trig Palin, Bella Santorum and all the children of ordinary citizens will be profoundly affected by what we decide.

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One response

  1. Kiersten Marek | Reply

    That downtown area can be scary with those Unitarian pledge collectors~!

    Thanks for the post, Nancy, and the reminder that we are only as civilized as our ability to care for those in need.

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