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The Voice of Poverty and Disability

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Why I think that health care is a human right.

  • jwirr (4136 posts)
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    Why I think that health care is a human right.

    In 1958 my oldest daughter Terri was born. She was small – only about 6 pounds 5 ounces and seemingly in excellent health. A beautiful baby girl. The family was all very in love with her.

    But something happened when she was 3 months old that changed all of that. Oh, she was still a beautiful little girl but she had a seizure – something that turned all of our lives around. My husband and I were very young and we had no idea what to do. His mother sent us to her doctor an old retired physician. He told us that she had colic and it would go away. But it did not go away – she had up to eight seizures a day. There was nothing we could do but hold her.  We needed another doctor.

    In those days Medicaid did not exist. Iowa had a “welfare” program for emergencies that was connected to the University of Iowa hospital. They sent ambulances out across Iowa picking up patients that would come to their teaching hospital for care. But you had to get the counties permission to take part in the program.  That is where we ran into trouble.

    A younger doctor we went to took one look at Terri and referred her to this program. So off we went to the local Social Services office. They listened to our story, looked at our beautiful baby and immediately turned us down for service. The reason they gave was because her father had used the program once in his life (to fix a clubbed foot). She was not eligible. Local doctors who did not know how to take care of the problem were going to have to take care of her.

    But the receptionist was an angel in disguise. As we walked out the door she whispered to us that we should take Terri to the Social Services office in the next county. We did get help from them – they were used to our greedy county sending anyone they could to them. Even the state knew about the abuses. But in those days the programs were totally in local hands. If the social worker could find any little reason to say no they did. Because Terri looked healthy she  must be healthy.

    Terri and I rode in that ambulance for her first 12 years twice a year to see the specialists and students who were helping us. I will say they did a very good job but it did not help Terri get better. She still had the seizures and she was also diagnosed with profound developmental disabilities. And later with digestive disorders including acid reflux with every meal she ate.

    Everyone including my husbands family thought I should put her into an institution. However, I came from a family that took care of their sick in their own homes and that is what I decided I wanted to do. It destroyed my marriage because in those days there was no help like there is today. I took care of her 24/7 365 days a year. She was total care – lifting, transferring, feeding, diapering, bathing, dressing and anything else that needed doing. It was fairly easy when she was small but as she grew she weighed more and was harder to handle.  She is still in this condition but today there is much more help and because of Medicaid and Medicare the family no longer has to foot the bill and go broke in the process.

    The LBJ war on poverty seemed like a dream come true for me – I could get out of poverty finally. So off I went to college – if my family (sister, brother, mother and father) had not moved to the college town with me so that they could help care for her and the two other girls also I would never have graduated. When she was 14 years old I placed her in a local nursing home especially for this group of people so that I could attend graduate college and get my MSW – I wanted to help other families like mine. That did not work out so well.

    The nursing home was full of severely disabled children and adults and Terri was not doing well there. As soon as I graduated I sent for her – the one thing I had learned at both colleges was that it was much cheaper to care for patients if they are cared for by the family. So I followed what I learned but not right away. First I had to learn the hard way the institutions are often very abusive. When Terri came home for Christmas she was black and blue all over the face. I called the institution and told them that if they wanted her back they would need to bring an army. I was right I was living on a reservation and my Native family would have stood behind me to protect her.

    Since this is about healthcare let me tell you about a usual day. I am going to start the day at about 5 am because that is usually when she woke up. Because it was quiet in the house she often made the only noises she ever made – loud a screams – happy ones – but screams none the less. By this time my ex was long gone and had another family of his own. We might be lucky to see him once a year but usually not. The state made him pay us $20 a month and he was angry about that.

    After she got up I would feed her but by the time she was 14 years old she was a victim of acid reflux and never kept her food down. (In Janesville Wisconsin there was a little girl in the same condition who died at 15 years old weighing only 15 pounds because of lack of care. I tell you this because that is Paul Ryan’s district.) At this time my Terri weighed 5o pounds. Still had the same amount of seizures and still was considered like a 1 year old child.

    When I moved to Minnesota things changed. In Minnesota I found doctors who found the answers we needed. And Social Services worked to help me find the solutions. She still had the seizures until just recently and we have no idea why they have decreased in number but it may be her age. She is still developmentally disabled. But they worked on the issues they knew how to work on.

    A dentist had the courage to take all of her teeth out so that the infection would stop. A OB/GYN had the guts to disregard the rule that we no longer gave young women hysterectomies – she had constant pain until the day they did the surgery. One week later her depression went away forever. A surgeon addressed the acid reflux and placed a tummy tube to feed her – she now weighs 80 pounds. She is happy content and alert most of the time.  Her body language say it all. In the institutions the doctors always insisted that these problems were just something that happened to all “these” people.

    The point I am trying to make is that without Medicaid and now Medicare this young woman would just have been left to starve to death. When she was first diagnosed they told me her life expectancy would be 30 years but that was what it was for those in the institutions. She is now in her 50s and her doctor tells us that she is going to outlive all of us because her vitals are perfect. She is living in a foster home now because I can no longer lift her. Her foster parents love her.

    Yes, I know that Paul Ryan and even our president do not think that it as a good investment to help her but for any thinking human being it is still a life. And I am thankful to have lived it with her. I took care of her for 45 years and never got paid anything other than welfare ($.65  an hour) because I was her mother. If I had traded her to another mother and taken her child I could have actually been paid. But I would still do it again.

    Fight for both Medicaid and Medicare for you may be saving a life.

    If you have any questions ask away.

    Enthusiast, MistaP, historylovr and 7 othersmmonk, FanBoy, Mom Cat, Charles, goodgirl, azurnoir, Port tack 8 like this

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  • goodgirl (2180 posts)
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    1. No questions…just a hug for you and your lovely Terri.


    Mankind must put an end to war before war puts an end to mankind.    John F. Kennedy
  • Mom Cat (15002 posts)
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    2. Thanks for sharing your story jwirr. You give a very powerful argument for

    Medicaid, Medicare and health care for all. I hope you can find a way to share this with a larger readership.


         NEVER FORGET      BERNIE WON!          
  • mmonk (2347 posts)
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    3. Thanks so much for sharing.