you need to see all of us

February 21, 2015 at 5:07 PM (Uncategorized) (, , )

in the media movies television there are many problems with how the disabled are depicted.  When positive stories come out [which is good]But the  the person with a disability is often put on a pedestal  called  inspiration porn.[which is bad.] That’s a term used within the community when someone is held up by the able-bodied and said, ” oh they’re so inspirational.”   Here is an article by an able ally…who seems to miss the boat just a bit.

My response.

There are plenty in the disability community who get enraged when they see only the fittest of special Paralympians shown on television, or an able-bodied actor playing a person in a chair. The full spectrum of disability in media should first include disability, which  cripjocks   are. They are part of the mosaic. They should be represented. What they should not be represented as is the only face of disability. Or the only  good face of disability.

We will have made it when we are all represented. All of us. The cognitively challenged as well as the physically challenged. The tall the short the conventionally beautiful and the not so much.  On crutches and off.    There has been some progress here, but  we still have a way to go. That’s the first part.

the second part is:   We are  people.  We are not alabaster saints or terrible sinners. we are engaging with the world, and we are hidden away. We are  workers for money or workers giving of our time. We are loving spouses and parents. And we are those who cannot be that. None of these things or categories need to inspire anybody outside of our own community.   Yes, take joy in the successes of your family with disabilities, *just as you do with your able circle of people.*  It’s when that story is sent out into the wider world that things can happen…

Third thing, and this is the most important of all we are not here to inspire you. All too often do not have the time or the energy to do that. We are here to live our own  lives and tell our own story just as you do.  Should we tell you you you are inspiring when you manage not to park in the handicapped space? And specific to one of the author’s points, we aren’t here to stop you from whining about your first world problems…as a tool to distract or amaze so you quit.  I think you have the capacity not to do that without any help from us.

When you the able-bodied get to choose the parameters of inspiring, you are holding some of us up to an impossible standard that the able around us might now expect us to meet.

it’s good to see positive stories out there.  As long as there is no pedestal in sight.

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( No) Declaration of Independence

February 5, 2015 at 4:53 PM (Uncategorized)

So much for self directed care under the new Medicaid HMO’s.  Apparently, according to an article posted on the Columbus Ohio, NBC Affiliate’s website, Governor Kasich wants to eliminate all independent home health care workers.


Now an easy assumption to make would be that all the independent home health care workers would simply transition into agency or nursing home work, thus leaving the labor pool essentially unaffected.

Not so much. Now that this idea is getting public air,  1. any aide about to retire will simply do so once their position is eliminated.  Any aide with a skillset outside the healthcare field will use that skillset to leave the healthcare workforce…some will retrain for a new career starting now rather than take the six to eight dollar an hour paycut that will hit them when they go to work for a home health care agency.

Existing agencies cannot or will not fill the approximately 39,000 patient spots left open if the independent workforce disappeared tomorrow.  Some aides would make the transition, but not nearly enough.

I will be affected as well if this comes to pass.


I know some who have had the same independent aides for decades…this would be hardest on them.





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