Tag Archives: mary beck

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.

God’s Agents on Earth

Today my Facebook has a post from the tireless blogger, Pam Spaulding of Pam’s House Blend. MSNBC host, Professor Melissa Harris-Perry is getting flamed for pointing out the obvious truth that citizens bear a collective responsibility for the welfare of our children. Even if they are not our own family, we don’t tell them to go play in traffic. Well, maybe the grouchy guy who listens to Rush Limbaugh does, but we don’t call him an expert.

I replied to Pam–
Rush Limbaugh is childless despite 4 marriages. Glenn Beck has a daughter, Mary, with a disability. Maybe he never has taken any state or federal benefits for her care so far, but if the wealth ever runs out over the course of her life it will be the community that steps up. The same goes for Trig Palin. Are these people so sure their own children will never need the safety net they are tearing apart?

In honor of the gummint entitlements that make possible benefits such as Meeting Street School, Hasbro Children’s Hospital and public education for all children regardless of their medical condition, I’m re-running this post from 2009…

Recently I got an email from Jim Wallis at Sojourners, a progressive Christian organization.

Glenn Beck has received a lot of attention for his inflammatory rhetoric lately. Recently, he shared a personal story about his daughter who has cerebral palsy, which gets to the heart of his fears about health-care reform:

They [the government] will say exactly what doctors said about my 21-year-old daughter: “She may not really have a quality of life. She may not walk or talk or feed herself. But then again miracles happen.” The “then again, miracles happen” part of that will be left out of the conversation. And I will not be able to see my daughter’s 21st birthday, where I can reflect with her how miracles do happen. Because really, as I was told at the beginning of her life: Well, what kind of quality of life is she going to really have? I don’t know, but that’s for God to decide, not the government. -The Glenn Beck Program, 8/6/2009

I hope everything is well with Glenn Beck’s daughter, Mary, and I can’t argue with faith. I can understand the Beck family praying for a miracle, and I hope it was granted. But in the world of meeting material needs, petitioning God directly doesn’t usually produce a check out of thin air. For that, Glenn Beck would petition his insurance company.

He has faith that the insurance company will be there for him. And that is fortunate. Because if he discovered in his time of need that the insurance he chose wasn’t adequate, he’d have a very tough time getting a new insurance policy for his family, with a newborn needing medical care. If his insurance company stalled on paying, who would he look to? The law, and the government.

So the question is not ‘who will you trust, God or the Government?’– the question is how much you trust your insurance company. Because when you or your family have a serious health problem you will be in no shape to go shopping on the free market.

God helps those who help themselves, they say, and maybe God blesses us when we help each other. I don’t know how long private insurance covers a child with cerebral palsy, but there are Government programs to help people with disabilities. It’s possible that Mary is benefiting from one of these programs. They exist because private insurance was not willing to meet the need, so a public option was created.

God loves us all, but insurance companies have to collect more money than they disburse, and they maximize profits by denying care. They don’t get into philosophical arguments about quality of life, they just refuse to pay the bills. Then you have to appeal to the Government. So it’s in our best interests to keep our Government strong and regulate our insurance providers, so that they have to uphold a standard of care.

Glenn Beck has faith in God, but who are God’s agents? Blue Cross, Tenet and Cigna? It’s not a debate about God vs Government– it’s how much you trust private insurance. If your trust is not blind, you’ll want the Government on your side.

UPDATE: The passage of the Affordable Care Act, nicknamed ‘Obamacare’, provides protection for people with disabilities, like Mary Beck, who cannot now be denied insurance due to a pre-existing condition. As wealthy as her family is, she most likely will need the support of a government program, such as Medicare D, at some point in her life. Health care reform is beginning to change the focus of private insurance from paying for procedures to maintaining wellness. Ordinary working Americans cannot meet all the needs of a child with a disability without government assistance. I’m skeptical that even the Becks, with their millions, are immune from the contingencies we all face.

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