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.

Permalink Leave a Comment

( 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.





Permalink 3 Comments

A good friend

January 23, 2015 at 12:34 PM (Uncategorized)

It looks like they’re going through some things. I think I could help, I wish I could help but they’ve decided not to reach out to anyone at this time. So all I can do is good thoughts. I feel as if its important to offer, and just as important, for those that are my friends, to respect their wish to keep my distance. 

So I have to fight my inclination. I don’t know about anyone who doesn’t work for money anymore and who misses the idea of working, but for me it’s planted  this ridiculous urge to be useful, in whatever way is possible on any given moment. And it’s a different level of engagement depending on how I’m doing physically, but the idea of being useful is always there.

I also realize that I need to make sure that the advice is wanted before I give it. So you take it slow you send good thoughts, and hope things work out for the best. And yes you can be useful even from a place of stillness, even from a place where movement is halted, even from a place where discomfort is a daily visitor.

Permalink Leave a Comment

Disability beneficiaries may take a20 %

January 8, 2015 at 6:20 PM (Uncategorized)

cut in benefits in 2016.


Permalink Leave a Comment


November 30, 2014 at 9:00 PM (Uncategorized)

Time and time again, you read or hear about the virtues of forgiveness. Forgiveness by itself is supposed to be good both for the forgiver and the recipient both physically and mentally. The darker side of my setup has always been opposed to forgiveness just for its own sake. I’m revising that a little bit but I know that some readers who think about both spiritual and moral matters quite a bit might think that I don’t go far enough. But I am going a certain length. I am moving in a positive direction.

Grudges that are moderately new but still have the burnish on them,no,  this isn’t one of those. Nor is it one of those mid-level nineties or 2000 grudges that is quite a bit far back in the rearview mirror but the circumstances indicate then I’m not even allowed to either ask for forgiveness or offer it to the people in question because that would violate their edicts that I never communicate with them again. No this is an oldie.

I won’t talk about the nature of the grudge or who is involved directly. I’ll just say that I have one question to put on the table for the general readership. It won’t change my mind about forgiving this person. I intend to do so and I’m going to. It’s more about the definition of forgiveness. Since I’m such a rare forgiver  I wonder? Does forgiveness mean that I have to put the contours of their life first in my thoughts  or make it a point to talk to them again?

Because if that’s what forgiveness means, like I’ve still got more growing up to do.

Civility, and warm sincere inquiries about their family it’s something I think I can manage should it come up. I don’t want to seek this person out. But I think I can forgive. I think I can do that but I need to know what the general idea of forgiveness is among my readers and it depends on what I see.

Are you allowed to forgive someone and still not seek them out? In other words if they arrived at your door you’ve got to be person enough to invite them to have a seat, but you yourself wouldn’t necessarily send out an invitation. Is that enough? And if people think it’s silly to ask this question, I ask it because as I’ve said forgiveness has been a hard thing to learn how to do. I don’t do it often and I don’t do it easily. I should. It’s a leftover from the Mcwherter temper and childhood difficulty that I’m trying to get rid of.

Permalink 1 Comment

Next page »


Get every new post delivered to your Inbox.

Join 169 other followers