Observations From Below: This is Your Last Breath

OBSERVATIONS FROM BELOW: THIS IS YOUR LAST BREATH

I have loved TED Talks since college. TED Talks “began in 1984 as a conference where Technology, Entertainment and Design converged, and today covers almost all topics — from science to business to global issues.” When I was first introduced to them, one of my favorites was given by the female comedian with a disability, Maysoon Zayid. One of the things I love about her presentation is that she explains as she said that CP is only one of her many, many problems. I have was recently reminded that I am in the same situation. You may have noticed that I haven’t been blogging a lot lately. There are a couple of reasons for that. One is I have been traveling to conferences a lot, spending time advocating for certain important provisions in the ACA that help people with disabilities.

However, the main reason I haven’t been writing as often is I haven’t been breathing well at all for the last few weeks. Every time there’s a shift in the weather, my asthma flares. Today is my last day taking prednisone for now, so I can finally write this blog that I have been thinking about. I think in some ways my asthma is more of a hindrance than my cerebral palsy. I know some of you are probably shocked, and others may think that I’m minimizing CP. I’m not. I’m simply saying that there are ways to live a very productive life with CP.

There are several government funded programs which provide direct support professionals to take care of my physical needs, and other programs which provide technology to make me a more productive citizen. But if I can’t breathe, it’s hard to do anything at all. I can’t write because I dictate most of my writing. It’s hard to focus in meetings when I’m focused more on not coughing in meetings. Now I’ll have to be more selective on what I contribute in meetings because when my asthma’s bad, I can’t complete sentences very well. I guess, by comparison, my CP doesn’t change much. It’s not a progressive disease. The level of CP I have is the same as I had and will always have as long as I keep my therapies up and continue regularly checking in with doctors.

CP has always been part of my life experience, so I’m very used to it. I don’t have a negative association with it. Asthma has also been part of my life, but there’s nothing positive which comes from not being able to breathe. And I can remember most every asthma flare-up. Before I received my nebulizer, my mother would have to run me to the hospital late at night to take a treatment of an albuterol bronchodilator. I’m thankful that I now have a home nebulizer, so I no longer have to make those late evening runs.

I seem to be getting over my latest episode. I switched medications, and as I’ve said, I’ve finished my last prednisone course. I hope this works because I have to be even more careful than most people with prednisone. It can create bone problems, given that I don’t stand and bear much weight very often. I am already at a higher risk for bone weakness as I get older, so even though the prednisone stops the asthma attack, it’s very risky.

All this is happening while there are a lot of changes being discussed in Congress to our healthcare system. I explained in my last blog that they didn’t have the votes when I went to Washington. Now they had the votes, and it passed, moving it one step further in the legislative process. There are even more bad policy provisions than there were in the last bill. The scariest thing for me are the massive cuts to Medicaid proposed in the bill. Medicaid is not only health insurance; it’s funding the equipment and the personal care assistants I talked about before. Without Medicaid, my quality of life will decrease, even if there is only a slight cut. Right now, they are talking about 25%, which is a whole lot more than a slight reduction. I’m trying to stay calm, and remember that there’s a long, long process ahead with a lot of potential for change. But we need to do what we can to protect Medicaid. The following are recommendations from American Association on Intellectual and Developmental Disabilities, The Arc, The Association of University Centers on Disabilities, the National Association of Councils on Developmental Disabilities, Self-Advocates Becoming Empowered, and United Cerebral Palsy:

· Congress must understand that Medicaid is a necessity to people who have I/DD and their families!

· Congress should protect the individual entitlement to Medicaid.

· Congress should reject reductions or caps to the Medicaid program, and reject any effort to block grant Medicaid.

· Congress should address the nation’s need for an affordable, accessible system of health care and long-term supports and services.

· Congress should not repeal the Affordable Care Act without simultaneously replacing it with a law that maintains or improves the coverage, including the long-term services and supports change, in the ACA.

· Members of Congress should act to remove the institutional bias of federal programs, eliminate waiting lists for LTSS, and to strengthen the right to community living for individuals with disabilities.

I’ve said before that disability isn’t my personal issue. I have friends with disabilities on both sides of the political spectrum. We all need to sit up and tell Congress not to mess with Medicaid. It is a very expensive program, that is true. I think they will find out that it’s cheaper to keep it the way it is than to have to treat all these people with disabilities in the hospital. I have been advocating through my asthma attack. Please join me in contacting your Senators especially. The ball is in their court now.

Breathing heavy, that’s how I roll.