This is old news, but good news.  On June 25, 2013, a Smithsonian press release announced that:

The Smithsonian’s National Museum of American History will launch “EveryBody: An Artifact History of Disability in America” to explore themes and events related to the history of people with disabilities in the U.S. and offer a new perspective on American history. This online exhibition is a first-of-its-kind image compilation that provides access to objects and stories related to the history of disability that have been collected at the museum for more than 50 years. The information is presented in English and Spanish, and the website is designed to be accessible to all users, including those using specialized software for vision or hearing impairments. All pages on the website follow federal accessibility guidelines, which are outlined on the site’s Accessibility Statement page. The website is available at everybody.si.edu.

Several Not Dead Yet artifacts are included in the online exhibit, something long planned by its curator, Katherine Ott,  who also curated a physical exhibit of these artifacts over a decade ago.  A note from Ms. Ott posted with the online exhibit states, “This exhibit physically existed in the gallery from July 2000 to July 2001. Now it is only available on the web.”

I got to see it once, and was very glad to find it displayed right next to the exhibit of lunch counter protests in the Civil Rights Movement.

In no particular order, here are links to the NDY items.

NDY button – I think this was part of the 1997 US Supreme Court rally and was included with a larger collection of disability rights buttons.

NDY knit hat – (Scroll down the displayed items.)  Bunny McLeod of New Hampshire ADAPT and NDY used a hand held knitting machine and designed this hat for NDY to sell to keep NDY and ADAPT activists warm during the cold weather protest actions.

NDY Lapel Pin:  T4 Never Again – (Scroll down the displayed items.) “T4” is short for the street address Tiergartenstrasse 4, the location of a group of German psychiatrists and physicians in charge of killing more than 100,000 people with disabilities in the eugenics program conducted during the time leading up to World War II.  We designed and made this pin for our protest against Princeton University for hiring Professor Peter Singer, an advocate of euthanasia of disabled newborns as well as a cognitive test for “personhood” that could be applied to determine the status and legal rights of individuals with intellectual disabilities, severe brain injuries or dementia.

NDY t-shirt – This display includes the first NDY t-shirt, which about 45 disability activists wore on June 21, 1996 in our first protest action, targeting Jack Kevorkian, the Michigan pathologist known as “Dr. Death” for the assisted suicides or euthanasia deaths of about 130 people, with a second day of protest focused on a bioethics conference.

And just for fun:

ADAPT Photo – A much younger me is on the far right next to Cassie James, blocking an inaccessible bus with ADAPT.

Hopefully, one day, there will be a permanent physical exhibit of disability history at the Smithsonian.  Meanwhile, we thank the curator, Katherine Ott, for her long term efforts to see beyond the medical model of disability and document our disability rights movement as a central part of disability history. – Diane Coleman

[Editor’s Note:  Cathy Ludlum submitted this response to the IOM Committee’s online survey on Oct. 31, before the Nov. 1 deadline, so this is a belated sharing of her excellent input.  Let’s hope they pay attention as they prepare their final report that is due in 2014.]

Question: If you are an individual living with a serious progressive illness or condition, or a loved one of an individual please describe your experiences receiving care. . . .

I am an individual in my 50s living with a serious and progressive condition called spinal muscular atrophy (SMA).  Although at this moment I am not “likely approaching death,” my survival has been in doubt at times, and without the skilled support of the people around me (whom I have trained in how to meet my needs), I would not live for long.

People with disabilities like myself have a great deal of knowledge about adapting to change and quality of life… knowledge that the medical community and others with serious and/or terminal conditions might benefit from.  Thank you for inviting us to speak to you.

I had near-fatal pneumonias at ages 12 and 14.  The second one, especially, taught me several important lessons:

1.  Whenever doctors do not know what else to do, they start talking about a tracheotomy.  Sometimes this is appropriate, but in my case alternative approaches have been effective.  One was suggested by a medical resident, and another was brought forward by me.  I have never had a tracheotomy, and my breathing is good considering that I have SMA.  I think this goes to show that practitioners need to look beyond the obvious and to use less invasive techniques whenever possible.

2.  I avoided getting a tracheotomy at 14 (and most likely dying anyway) because a young resident realized that deep suctioning every two hours was irritating my lungs and making my pneumonia worse.  He ordered that suctioning be stopped and a direct pressure technique called assisted coughing be used instead.  I immediately started to improve.  I have used assisted coughing ever since.  I believe it is one reason why I have lived so long when many of my SMA peers died in their teens or twenties.

Since the age of 14, every time I have been in the hospital, I have had to make sure I am not deep suctioned and that I have access to assisted coughing.  When medical personnel listen to my understanding of my own body and we work together as a team, things go well.  When they act as if they know everything and I know nothing, things go badly.

Because of my disability, I am small in stature and have only the limited use of three fingers and everything above the neck (except that my swallow is poor).  For the last 16 years I have received all of my nutrition through a feeding tube, and for the last 13 years I have used a bipap to support my breathing when I am asleep.

Based my appearance, functional status, and use of life-sustaining technology, people tend to assume that my life is hopeless and unbearable; when I tell them I have my own home, a college degree, meaningful work, and typical social relationships, and that I hire and train all of my support staff, they don’t always believe me.  What’s worse, assisted coughing is not a universally accepted practice, and if I can’t get it when I need it, I will die

I know now that I must have an advocate with me at all times when I am hospitalized, both to verify who I really am (as opposed to what I look like), and to secretly do assisted coughing with me.

As far as talking with my loved ones about my health care decisions, I have made it clear that I will be fighting until the end.  I have said so through my advance directive, and in conversations with the people I appointed to be my health care representatives.  I have already survived many battles that looked unwinnable.  In the community of people with severe physical disabilities, death shows up frequently and living a long time is the exception to the rule.  A good attitude certainly helps.  Part of that is feeling that I still contribute something of value to the people around me and to the society.

While I do not like change, I have lived through many transitions as my physical abilities have diminished.  Strangely, the weaker my body becomes, the stronger I grow emotionally, and the more confident I feel about facing the next challenge.  I am not afraid of using more technology should it become necessary.  Most importantly, I will continue to nurture my relationships.  Whether you have a disability or not, interdependence is the key to a secure and fulfilling life.

As for my spiritual needs, I feel blessed to have been given a unique perspective on life and the ability to use my journey to benefit others.  One day the journey will end, but not because I gave up, and not because the medical profession gave up on me.  I have a wonderful life, and I expect to have a good death.

Question: What do you see as the biggest barriers to care (for individuals with serious progressive illness or condition) that is appropriate and easy to access?

1.  Lack of training about disability culture and lifestyle for medical students, student nurses, and others preparing to join the healthcare field, as well as experienced practitioners.  Stereotypes that people with severe and progressive disabilities are suffering and/or on the verge of death make it more likely that practitioners will suggest comfort care when aggressive treatment would be offered to a nondisabled patient in a similar situation.

2.  Changes in the healthcare system in recent years have made it increasingly difficult for medical practitioners to get to know their patients.  For people with severe and progressive conditions, this is truly dangerous.  Appearances are are often deceiving, and medical issues may be complex; a 10-minute visit often accomplishes little.

3.  The movements to promote physician assisted suicide and Physicians Orders for Life-Sustaining Treatment (POLST) carry specific dangers for people with severe and progressive disabilities.  Both movements feed off of the fears held by physicians and the public about losing independence and control over one’s life.  Making it easier for people to die distracts us from the very real problems of poverty, isolation, shame about our bodies, feelings of being a burden, and the lack of meaning many struggle with in our modern age.

4.  Expressions such as “artificial nutrition and hydration” cloud people’s decisionmaking process.  I have been using a feeding tube for many years, and I promise you there is nothing artificial about what I eat.  The calories and the nutrients are there, and because of this I am able to continue living my very real life.  It would be more accurate to say “tube-administered nutrition and hydration,” and I encourage you to start doing so.  We do not call diabetic medicine “artificial insulin,” and we do not call hearing aids “artificial hearing.”  Biases in our language cause unnecessary fear and can cost people their lives.

5.  Alternative treatments such as assisted coughing need to be explored, endorsed, and provided in institutional settings such as hospitals and nursing facilities.  Just as massage, Reiki, and chiropractic treatments are gaining acceptance in the world of Western medicine, so should other treatments that have lifesaving results, promote healing, or alleviate symptoms.

Question: What three changes in the U.S. health care system could improve care of individuals with serious progressive illness?

1.  Require mandatory training about life and culture of disability for all who are preparing to join the healthcare field, as well as those who are already practicing.  Understanding how we live will reduce the perception that we are just hanging around waiting to die.  Some efforts have been made to provide this type of training, but these have been small and limited.  Everyone in the healthcare system needs to hear this message.

2.  Return the human touch to the field of medicine.  Make it possible for practitioners to spend a reasonable amount of time getting to know their patients during office visits and dealing with their concerns through the years.  A doctor who has taken the time to listen to an individual, and become familiar with her his or her patterns will be more effective in treating problems than a hospitalist who comes on the scene during a crisis.

3.  Renounce physician assisted suicide as bad medicine, and take a second look at Physicians Orders for Life-Sustaining Treatment (POLST).  Regarding physician assisted suicide, people already have access to advance directives, the right to refuse treatment or have it withdrawn, and quality palliative care.  Some patients may still choose to end their lives by their own hand, but let’s not have doctors endorsing the practice or participating in it.  POLST attempts to solve the problem of overtreatment, but this is premature when so many in the disability community and other devalued groups are are typically undertreated.  Slow down the process and listen to the perspectives of people who already use life-sustaining medical technology.  Create a tool that ensures that people’s decisions about treatment are made using full and unbiased information, free from coercion, and stable over time.  Otherwise the “choice” is meaningless and people will lose their lives against their will. – Cathy Ludlum

This week, November 11, the Board of Directors of the Organ Procurement and Transplantation Network (OPTN) adopted a policy that removed two major threats to people with disabilities posed by previous proposals.  This is the key paragraph:

2.8  Requirements for Controlled Donation after Circulatory Death (DCD) Protocols

Introduction:  Donation after Circulatory Death (DCD) describes the organ recovery process that may occur following death by irreversible cessation of circulatory and respiratory functions. Potential DCD donors are limited to patients who have died, or whose death is imminent, and whose medical treatment no longer offers a medical benefit to the patient as determined by the patient, the patient’s authorized surrogate, or the patient’s advance directive if applicable, in consultation with the healthcare team. Any planned withdrawal of life sustaining medical treatment/support will be carried out in accordance with hospital policy.  The timing of a potential DCD donor evaluation and donation discussion shall be coordinated with the OPO and the patient’s healthcare team, in accordance with hospital policy.  Prior to the OPO [Organ Procurement Organization] initiating any discussion with the legal next-of-kin about organ donation for a potential DCD donor, the OPO must confirm that the legal next-of-kin has elected to withdraw life sustaining medical treatment.  Death is declared by a healthcare team member in accordance with hospital policy and applicable state and local statues or regulation. A DCD donor may also be called a non-heartbeating, asystolic, or donation after cardiac death donor.  (Emphasis added. Note also, in a later section, “legal next-of-kin” is defined to include the patient, which is relevant if the individual is conscious and using a ventilator.)

As we noted in a press release issued June 30, 2013:

“A year ago, over 200 disability advocates sent messages to the Organ Procurement and Transplantation Network (OPTN), expressing concern over proposed organ procurement protocols. . . . These proposals would have allowed organ donation to be discussed with individuals who depend on life sustaining treatment and their families before a decision to withdraw life-sustaining treatment has been made. This could affect people with upper spinal cord injuries, neuromuscular disabilities and severe brain injuries.”

We know that OPTN noticed the over 200 advocacy message letters because they mentioned them in a Briefing Paper issued this year titled “Proposal to Update and Clarify Language in the DCD Model Elements.” (The June 30 press release links to the Briefing Paper that reviews the comments received.)

Not Dead Yet filed public comments regarding both the proposed protocols and related changes to OPTN bylaws six times in the last two years.  You can find them all under NDY Public Policy activities.  We pointed to longstanding ethical protections against potential pressures being placed on ill people to die and donate their organs.

NPR’s Rob Stein has also covered the issue.  And this summer, over 120 disability advocates responded to an NDY Action Alert and sent messages to U.S. Health and Human Services Secretary Sebelius objecting to OPTN’s plan to abdicate its responsibility to set national standards and instead defer to individual hospital autonomy in setting local policies.  The OPTN Board tabled the issue one more time, but did not correct the problems and the committee members apparently continued to haggle.

In our most recent comment letter filed on October 17, 2013, we also expressed concern about a more recently proposed provision:

Potential DCD donors are limited to patients whose medical treatment no longer offers a medical benefit as determined by the patient’s primary healthcare provider and in consideration of any available advanced directive executed by the patient. 

In response, NDY said:

This provision is objectionable and inconsistent with principles of patient autonomy because it allows the primary healthcare provider to determine whether medical treatment offers a benefit, not the patient or healthcare proxy, and only “in consideration” of an advance directive.  In the majority of states, which have “futile care” statutes allowing doctors to overrule patients who desire life-sustaining treatment, a futile care decision by a doctor would make the patient a potential DCD donor under the proposed policy.  We sincerely hope that this is not OPTN’s intent, but is an unintended consequence that requires further revisions to the language.

The National Catholic Partnership on Disability and National Catholic Bioethics Center also consistently filed public comments in response to every OPTN invitation pertaining to the DCD policies.  In the last round, they pushed for and secured the language, “Potential DCD donors are limited to patients who have died, or whose death is imminent” in the final requirements.

Frankly, I shook my head many times, doubting that we were having any impact except possibly scaring the decision-makers into perpetual inaction.  And, like many of you, I know people who need organ transplants, and sadly recently lost my younger brother for the lack of one, so I want to be able to trust the organ transplant system.

I don’t yet trust it, but I am genuinely heartened by the victory this week and the invitation to continue a dialogue.  I hope that many of you will participate.  You can sign up for public comment notifications by going here. – Diane Coleman

[Editor’s Note:  In my full written comments on POLST submitted to the IOM Committee in July, I mentioned, “One advocate I know suggested that we need a disability educational campaign called ‘We Love Our Tubes’ or ‘Tube Pride.’”  That advocate was John Kelly.  Here, he tells more of his story to the Committee, responding to Question 1 of the online survey that closed last Friday. John’s response is also available on the Public Policy section of our website here. – Diane]

I am a 55-year-old white man who is a quadriplegic based on a spinal cord injury in 1984.  The level of my injury was at the fourth cervical level, resulting in near total paralysis below my shoulders.  My breathing ability survived the injury, and after diaphragmatic strengthening, I have breathed without assistance for the last 30 years.  I drive a powered wheelchair with a sip/puff tube, live in the community with assistants I hire and manage myself, and work part-time as a disability rights advocate.  I am a writer and community leader in the disability community.

First, I never heard the word “death” uttered around me in the immediate time period after my injury.  No one mentioned the possibility of donating my organs, no one said the words “it might be for the best,” no one queried me regarding my “choice” to live or die.  The nurses at the rehabilitation hospital were gung ho on getting us all up into our wheelchairs and maximizing our abilities.  We spinal cord injured people learned about “independent living” and how the main impediments to us doing what we wanted to do were architectural and prejudicial, not biological.  I’m afraid that if I were injured today, I would be carefully consulted as to whether I really wanted to stay alive or not.

Based on my high level of spinal cord injury, I am quite susceptible to autonomic dysreflexia, a life-threatening condition in which blood pressure skyrockets to dangerous levels because of a pain or irritation below the lesion site.  I also have a suprapubic tube inserted directly into my bladder.

I have had a wide range of experiences with medical professionals, but they always are a cause of high anxiety.  I can simply not trust that a healthcare professional will listen to me, when I tell them what my body needs.  The level of ignorance is so high, unfortunately, and the level of arrogance equally high, that I have been frequently endangered or simply ignored in a hospital setting.

When I had only had my suprapubic tube for a short time, the tube blocked so I went to the emergency room.  The two young Harvard-trained doctors must have asked me four times about what kind of surgically-altered bladder I had.  I was reduced to repeating, over and over, “I have a normal human bladder.”  They were so ignorant about how to insert a new catheter that it fell out in the shower the next morning.  Now one of my personal care assistance changes it without problem.

A few years ago I was outside on a hot summer day.  I got overheated and lost so much strength that I was simply begging people for cold water.  A security guard called 911, and while we waited, I used all my mental energy to form my story.  I laid it out as carefully as I could, and when the EMT arrived, I said “Sir, I have a spinal cord injury and am overheated.  I just need cold water.”  The EMTs were outraged that I was telling them what I needed, rebuked me, would not give me water, and would only transport me to the hospital.

At the hospital, I told everyone who came over that I was overheated and desperately needed cold water.  Over and over I was either ignored or rebuked.  I still could not get my ice water.  They insisted on putting a hospital gown on me as I felt like I was about to explode.  A nurse reprimanded me as she started giving me an IV of saline, with a diagnosis of dehydration.  The fluid only pushed up my blood pressure, caused by my being on my back.  (I take midodrine).

I talk with other severely disabled people, we all experience stark terror in a hospital.  So often, staff think that our lives are pathetic or pitiful.  Some nurses ignore our call requests.  We swap stories of the horrors, but we all agree that we must be as sweet and compliant as humanly possible in order to hope for decent treatment.

My medical provider is an innovator in home-based care for adults with severe disabilities. The practice has been in the business 30 years and is now expanding its services to include all disabled adults with eligibility for both Medicaid and Medicare.  This is a Onecare demonstration project under the ACA. The medical group has provided me excellent care.

Three months ago, my nurse brought me the Massachusetts MOLST form, with its preferences for certain treatments in extremis.  She had been told that they were to complete these forms with every disabled person she follows.  I found the form oppressive, and have never in my life seen a questionnaire in which “No” was on the left and “Yes” was on the right.  I thought these forms were for people near death.

I asked her what she had been instructed about the form, and whether there were any materials for me.  A few minutes earlier, she had given me the notification form for my annual flu shot.  But nothing to accompany the MOLST form.  She didn’t receive any training, either. And while I was confident filling out the form, others may not be.  I believe people should receive notice that they will be hit with this kind of form, and be able to have another person present when the discussion happens.

I know people in my community who have been badgered about having a DNR.  We hear stories in the media about disabled children having DNRs slapped on them.  We have friends who use ventilators, and don’t think that they are extreme interventions.  Two of my best friends – a writer and a playwright – used ventilators for years.

The characterization of a feeding tube as “artificial” is insulting.  I am very happy with my suprapubic tube, a simple rubber catheter that takes care of my urological needs very well.  My writer friend also got a feeding tube and she loved it for keeping her alive.  The food that went into it was cooked with just as much love as anything someone else would put in their mouth.

One of my friends works for a man with a head injury.  When the nurse approached him with the MOLST form, he became extremely agitated, as this kind of harassment has gone on for years.  He says over and over that he wants to stay alive, and gets angry when questioned on that decision.

Right now I am working with a group to negotiate improvements at Boston Medical Center, the city hospital of Boston.  Here, like all across the country, disabled people can’t access diagnostic equipment, can’t get onto exam tables, can’t get weighed, can’t even be equipped with a device to call the nurse.  We are terrified of hospitals, and it should be the highest priority of the Institute of Medicine to change that fact.

John B. Kelly