Pages Menu
TwitterRssFacebook
Categories Menu

Posted by on Feb 13, 2013 in Blog, City Pages, Gabe Rodreick, Jack Jablonski, SCI CURE, SCI Research Fund Bill | 0 comments

Looking forward with a quick look back

IMG_0318

Hello all,

Thanks for the comments, questions and offers regarding the last post. I feel the need to clarify a couple of things, and hopefully answer the questions many of you raised. First, those who testified against the Bill were not out in great numbers, as it seems some of you thought. There were four people in wheelchairs present in the room. One (Gabe) testified for the Bill, obviously. Two (one of whom has a SCI) testified against, one who was against but did not testify. There were three others in the room with a disability, two of whom have brain injuries testified for the Bill along with myself and Dr. Rockswold (neurosurgeon from HCMC). Here’s a nice synopsis from the City Pages Blog.

The point I was trying to make is simply that we need to show more support for this effort. Again, I thank those of you who copied me on emails to the Committee members, sent me your statements or left me messages that you called or emailed. Those committee members need to hear from you, and if you’re able in the future, need to see you. They need to know that the opposition is small, albeit committed, but do not speak for the vast majority of you.

The second thing I want to say is that I do not begrudge those who testified against this Bill, even though I thoroughly disagree with their position(s). I would encourage you to not go on the attack and speak ill of them. We spoke with one of the dissenters at length before the committee began and it was an amicable discussion. The issues raised were twofold:

1. they are concerned that the funding from this Bill will take money from community services for the disabled. This is a fair concern, and one that Sen. Hayden addressed early on in his testimony. He stated that he was requesting new dollars to be appropriated for this Fund, so as to not take money from current necessary funding…funding which we also rely upon.

2. If I correctly understood this gentleman’s position, it is the concern that this request exists on a continuum of the perception that the able bodied community has of people with a disability. The continuum is the expression of how disabled people are valued and then served. He seemed to be concerned that the need to fix or cure people challenges the bedrock of their paradigm, namely that the disabled are valued members of society as they are, not as they were or could be. I am doing a lot of paraphrasing and making some assumptions regarding his statements, which were at times hard to follow, not because he was inarticulate, but because it wasn’t altogether clear. This is an argument I have heard a number of times, but one with which I do not agree. Gabe began his testimony with: “I was broken on that day,….My body was broken. Everyday since I’ve been wanting to be fixed.” I believe that Gabe will be truly valued by supporting his desire and the science that will fix what was broken…and if you were to come and see him on stage at the Cabooze, Fine Line or the Driftwood this Friday, you won’t see someone who questions his value while waiting for a curative therapy.

I made tentative plans to get together with this gentleman in the coming weeks in the hope that I can better understand his position, and though its not a prerequisite of our conversation, maybe a chance to better explain mine.

Our Bill will be heard in the State and Local government committee. This one I am told will not be a significant challenge, because it will not be questioning the value of the bill, but rather the details surrounding the commission that would be set up to review research proposals if the bill were passed. Its the next stop that will be a taller hurdle. The Bill will then go before the Health finance committee and this one will be measuring the cost/benefit of this request. This is the committee that will need to hear a loud voice of support. I will keep you posted on dates and times, and will keep you abreast of my meetings with legislators on that committee in the coming weeks. I will also post some talking points as I refine them during those meetings.

Thanks for your continuing support

M

Post a Reply

Your email address will not be published. Required fields are marked *