Thursday, January 7, 2010

What is Disability?

As I ponder the end of life care landscape on a daily basis, I've come across the many opponents to aid in dying. Disability advocates, in many cases, have worked with "pro-life" groups in order to protest what they call the vulnerability of the disabled when aid in dying is legalized, as was just done in Montana.

This argument co-opts the "pro-life" position that aid in dying (or assisted suicide or euthanasia) is a slippery slope and holds up nations like the Netherlands, where aid in dying is legal, as example.

There are a thousand ways to parse the statistics but the statistics in the US - and the way that aid in dying has been legalized, regulated, and practiced here - do not bear out the accusations.

But the slippery slope argument makes me wonder, What is Disability? Is it frailty at the end of life? Physical or mental challenges present from birth like blindness or Downs Syndrom? Or physical challenges encountered later in life like spinal cord injuries? Brain death (as the Schindler family, Terri Schiavo's parents and siblings contest)?

Until we have a more detailed understanding of what disability is we will be left to struggle with the argument of who has the right to determine their own choices, who is "vulnerable" and what dignity or quality of life mean.

VSA Arts is running a project that asks people around the world to submit postcards that explore the definition of disability. I look forward to what they receive.

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Blogger Susan Lash said...

I worked in the program/policy area of end-of-life for persons with developmental disabilities for several years. We encountered hospitals, physicians, others in medical community who at times would be reluctant to treat our clients in the same manner that they would treat you or me. I could give lots of examples, but I think the overwhelming driver for these actions was an underlying view by the medical community of “seeing” our disabled person as someone who was both very sick and (in their mind) had no quality of life. It was that underlying belief, more than anything else, that was the reason for their discriminatory attitude and practice towards treatment, in my experience.

An example, we had a female client who was diagnosed with breast cancer. At the first meeting with the physician he asked, “So what do you want me to do”. After clarifying that he was indeed talking about treatment, the caregiver accompanying the client told the physician, “I want you to treat her in the same way you would treat your sister”. There were times that a client would go into the hospital with a treatable condition only to have the physician encourage the family to complete a DNR (not an Advance Directive, which would have been appropriate) and then treat them accordingly rather then more aggressive (curative) treatment with antibiotics, etc. There were times we would have to pursue aggressive (curative) treatment via the hospital ethics committee to get it accomplished.

In my mind, it is these types of experiences that make the disabled community apprehensive toward end-of-life issues.

January 7, 2010 at 8:04 AM  
Blogger Susan Lash said...

This comment has been removed by the author.

January 7, 2010 at 8:56 AM  
Blogger L A Neumann said...

Hi Susan,

Thanks for writing. I completely agree with everything you say. Unpacking the attitudes that lead the medical community to view disability in derogatory (patriarchal, authoritative) ways that will motivate a strong patients' rights movement is not an ability that society yet has.

Do you think that the fears disability advocates have regarding their own vulnerability under Death with Dignity or aid in dying laws are legitimate?


January 7, 2010 at 9:29 AM  
Blogger Susan Lash said...

P.S., You asked, what is disability? I believe disability is everything you cited plus many other things. Governmental agencies define disability in terms of impairment, limitations, ability to complete Activities of Daily Living (ADLs) etc. In my mind, if we all are fortunate to live to old age, we will all incur disabilities. The bottom line for me is that regardless of our disability or ability, we should all be viewed and treated as a person with full rights.

January 7, 2010 at 9:34 AM  
Blogger Susan Lash said...

With my understanding of those types of laws and if the requirements of them are strictly adhered to (namely terminal illness diagnosis, 6 months left to live), no, I do not think their concerns are legitimate but I do think they are understandable.

With that said, based on my work experience I understand their concern because laws are sometimes misconstrued and misapplied. However, on the flipside, our society is so death phobic and the execution of these acts will be so closely monitored, that it is unlikely it would happen with this specific law. Personally, I believe that laws enabling people to take control of their deaths when they are dying are good and needed.

January 7, 2010 at 9:59 AM  
Blogger L A Neumann said...

Agreed. Your point about understanding where the fear and concern come from is necessary and wise.


January 7, 2010 at 10:19 AM  
Blogger Susan Lash said...


Your blog post led me to write my own about this subject, "Misconceptions about Disability and Dying". If you are interested take a look:

Thanks, Susan

January 12, 2010 at 3:25 PM  
Blogger L A Neumann said...

Great post. I want to clarify one thing: palliative care does not mean giving up on a patient or their "quality of life." I fear that society often lump hospice and palliative care into the "can't be saved" category and that is unfortunate. Hospice and palliative care can extend life even. Not being able to cure an illness doesn't mean giving up on the patient.

Thanks for coming back and sharing your link with me/readers. Next time please share my link with your readers. Citation rules!

Very best, Ann

January 12, 2010 at 3:37 PM  
Blogger Susan Lash said...

Agree with you completely on palliative care. I'm going to go back and add a link to your post and also see if I can phrase that section diffently to be more clear. I wasn't sure if it was okay to link to your post without your permission first. Thanks for taking the time to read it and for your feedback.


January 12, 2010 at 6:17 PM  
Blogger L A Neumann said...

I'm delighted for the contact and back and forth! Thanks for your post. I think the issues of disability and end of life care/patient choice are getting far too little attention! Best, best! Ann

January 12, 2010 at 6:34 PM  

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