The Disability Dignity Problem

You wake up. You can’t move – your arms and legs were blown off by artillery. You can’t see or talk – the blast and shrapnel destroyed your eyes and face. You are trapped in your body.

But you can hear and think.

This is not the ultimate horror.

That comes when you hear and realize that everyone believes that you are vegetative and no one is going to talk to you or do anything beyond keeping you alive.

Abandoned alone with an IV.

This is the end of the film (originally a novel) Johnny Got His Gun.

It is an image that has stuck with me for decades.

I was raised in the Unitarian Universalist church and their first Principal is:

“The inherent worth and dignity of every person”

This seems to be a greater challenge than it would appear.

Love, Care, and Compassion aren’t Respect

I have (and have had) several family members who have dementia and know a good number of people with substantial disabilities.

There is lots of love. There is profound care. There is a deep well of compassion.

I’m much less confident about the recognition of worth and dignity.

It isn’t the same.

– and I include myself in that failure.

One of the early books my wife and I read during our family’s autism journey was “Ido in Autismland”.

Ido was/is a non-verbal autistic young man:

“.. trapped in a remedial educational system that presumed he lacked the most basic comprehension, and unable to show the world that he understood everything..”

It was a prescient warning (though his story ends well).

Non-Disability Dignity

Several years ago, I was at the Disability Caucus meeting at the California State Democratic Party convention. State Treasurer Fiona Ma spoke (and at several points) misspoke to the group… and she was verbally pounced on by several caucus members for her errors.

But, she showed up.

And, she spoke (granted a bit gracelessly) about doing better for disabled Californians.

No other elected official or party leader bothered to attend or speak (in a convention packed FULL of elected officials and party leaders desperately grasping for endorsements and eager to perform on stage and network with potential donors and volunteers).

I wonder if she ever came back.

I wonder if this had any effect on her subsequent work or attention to disability issues.

The Special Problem

I see this in the interactions between a few disabled adults and parents of disabled children over the term “Special”…

Parents of disabled children drown in a sea of “Special”.

“Special Education”

“Special Needs”

“Special Needs Trusts”

It has taken time, but I’ve come to see “Special” as a code word for “Segregated” and “Second Class”.

I don’t like the term (can we start using “Disabled Learners” in our schools?). The only time I use it is to connect with parents to help their disabled children… because if I don’t speak to them in the language they know and are comfortable with, they probably won’t listen to me… and then how can I serve them or their children?

It is the word parents hear all the time since no one wants to say the “D word”… Disability doesn’t exist in our school systems or supports for disabled children except hidden in the acronyms IDEA and ADA and occasionally SWD.

Yet utter the word “Special” in certain parts of the disability world and the knives come out before you can get out “Spe..”.

Inherent Worth and Dignity for every person goes all ways.

Assume Worth and Dignity (and Fallibility)

I routinely recommend Dale Carnegie’s book “How to Win Friends and Influence People” to parents dealing with our (Special) Education system.

One of his core points is that you shouldn’t take some actions (or inactions) as being about you. The school isn’t out to get you or hurt your child’s education (almost always).

Malice isn’t your problem (probably).

Blah, Blah Dignity Blah Blah

I mostly write about nuts-and-bolts tactics for dealing with our special education system and disability financial and services systems. I talk about moving somewhere better if you can’t get what you need where you are. And even about working to change our bureaucratic and political systems.

Tactics can work.. but they are just tactics.

But at the beginning and end of the day, big, real change is going to come from a basic change in our society’s relationship with disability. But that is only going to come after we change OUR relationship with Disability and with disabled and non-disabled people.

Even if they do not seem to be able to see, hear, or tell us … we still treat them All with worth and dignity.. for that is what we ultimately seek as well.