We are all surrounded with Death at every minute. From the time we take birth until our final exit, Death is a constant companion. A philosophy that helps me, at least, to cope with the inescapable fact and keep it in some perspective is: "until it is your time, nothing can kill you. When it is your time, nothing can save you." Or, said somewhat with a more humorous bent in "Brooklynese," "Until it is your time, ya got nuttin' to worry about. When it is your time, fugghedaboudit."
In "Brooklynese" or not, it is how we have lived in the past, how we live between this moment and the inevitable certainty of our exit that defines the quality of our life. True for all of us, disabled or not.
44
Interesting article but I am not sure what having pride in oneself has to do with the issues the author outlines. Perhaps our definitions of pride is and what people take pride in differs.
I work with a lot of disabled people and have friends and family members who are disabled. They take pride in actions like being as independent as they can be given their illness, being a good friend, being a great cook, etc. I'm not sure what that has do with deaths among the disabled, the problems with the healthcare system (and both these are important issues), or even the wish to not be disabled (to each his own but most of the people I know -- while trying to live their best lives -- would love for their to be cure tomorrow to their condition).
53
I suppose it differs from condition to condition, but I absolutely would like to be cured of my chronic conditions that limit the scope of my life. Clearly the author can and should speak for herself about if she wants to be cured or not, but I’m troubled by her generalizations. I don’t want to be proud of my disabilities. I want to be able to live a larger life than I currently can. Do I deal with the reality that I can’t? Sure. But I’m not in denial about the fact that I would wish these things away if I could.
178
@Elle Very true. I live with psychologically crippling pain. This woman cannot speak for the majority of disabled people.
28
I am typing this comment with one hand, because that is all I have. I am no more disabled than anyone else, nor am I any less so. All of us are DIFFERENT from one another. These differences require varied responses, a hearing aid, glasses, special devices on a car, assistance eating and a host of other means of support. What is not needed is a label that creates a separate class of people. It is extremely relevant to ask what type of support does one require in order to have as much freedom and health as possible. The requisite support needs to be readily available without placing a label on some with a word that emphasizes what they can’t do.
The well articulated struggle spoken of in this article has roots in this labeling. Words like special needs, disabled, and handicapped all add to such pain. Let’s not use them any more. Rather, lets identify what help is needed and provide that help.
Embrace and celebrate our differences, all of us.
53
@Paul It's very difficult for anyone to talk about anything anymore without avoiding conflict of some sort. We do need words to "label" things or people won't understand what anything means anymore. That's the whole purpose of language. For example, apparently we now offend those who do not identify with either biological gender. Is it offensive to them to see "Women" or "Men" on bathroom doors? What about "Unisex"? Both my sister-in-law and my father use walkers. My sister-in-law has been developmentally disabled since birth. She cannot do anything by herself, including go to the bathroom, use money, carry a purse, or even really have a real conversation. She's a lovely person and I care for her but how else to describe her so that someone who does not know her understands the situation? She's not "different abled"- she's literally completely helpless, like a child. When you make people villains over simple semantics, it really doesn't help anything.
49
I was pondering writing a comment but struggled with finding appropriate words w/o appearing to insult the author or an entire community. Your comment says precisely what I felt but was unable to word appropriately. Thanks.
9
It's been my experience that often times when some people are confronted with death and other people's grief, they react clumsily. “They are no longer suffering.” “She is now free to run.” “He is finally cured and now dancing among the angels.” may sound appropriate in their limited point of view, but it does nothing but insult or cause even more pain to the family and friends of the deceased. Sometimes the most heartfelt and earnest "I'm sorry that your loved one (or friend) passed away. I can't imagine your pain but I share in your grief" can have a deeper and richer impact. Even a simple touch or hug can have a meaningful impact.
80
@Marge Keller: actually when my mother -- who was disabled with MS for 10 years -- died, people said both those things to me (in different words) and I found it very comforting to realize that she was free of the pain that had dogged her life for so long....and I have often smiled thinking of my mom "dancing free" (whether among angels or whatnot) in a beautiful healthy body, like when she was a young woman.
That it offends YOU doesn't mean it offends others, and such things are often well intended.
On the other hand, saying "I share in your grief" -- coming from acquaintances or colleagues who never even MET your loved one -- seems generic and false.
36
@Concerned Citizen
I understand both sides of the conversation you pointed out. I think it comes down to being mindful of the bereaved. Most sentiments shared and voiced are spoken from compassion and care and love.
My comment was probably pretty clumsily written and I sincerely apologize if it offended you. I am glad to read that you found comfort in the words people expressed when your mother died.
I truly believe people mean well and want to express comforting, helpful and compassionate sentiments but are afraid they will say the "wrong thing". Frankly, I don't recall much of what people said to me when my mother died. But I recall vividly who was there to express their sadness for my loss. They made a conscience effect to take time out of their life to come to my mother's wake and/or funeral. Their presence meant the world to me and was extremely comforting.
22
@Marge Keller: I usually consider the intent of a condolence, not the actual wording. Usually there are no words sufficient.
But I will say that when my mother died after an illness that predated my birth--she was 47 and I was 15--two thoughts came to my mind immediately: She is no longer suffering. I am no longer suffering.
The latter thought haunted me for many years.
28
I'm a quadriplegic who was paralyzed by a drunk driver at age 19. I was in the military at the time and I use the VA. I spent 15 months in a VA facility doing rehab when I was first injured. I was young and made good friends with a lot of my fellow inpatients and outpatients there. Within 20 years almost all of them were dead. Even those who were under 30 when I first knew them.
It's rough. Fortunately I have been lucky to have tremendous family and friends and generally good health among those people in my inner circle. But when you have a significant disability and you have a lot of friends in the same boat, their health problems and fatalities do accumulate, far more rapidly than seems fair. It's an overlooked aspect of living with a disability and I thank the author for her thoughts.
236
@Tom Would you agree with what the writer said about not wanting to be "cured"? I understand acceptance and pride in one's accomplishments because of and in spite of disability. But I found what she said about not wanting to be cured (if it were an option) to be a bit strange, but that could definitely be my privilege as an able bodied person.
19
I don't understand the concept of "pride."
In America, we have such black/white choices: pity or pride. How about just being part of the human group, all travelers, who do our best, but sometimes need help. We don't have to be "fighters" or "survivors" to be good people. Sometimes we fall, sometimes we avoid falling, but falling doesn't make you less of a valuable human being. If only America could understand that.
103
I wouldn't understand Robyn Powell's essay at all if I hadn't had the great good fortune to have a friend, blind from birth, who has no desire to be other than he is. He has a graduate degree in music, is a gifted jazz musician and teaches at the college level. I would love to get him to write up his experience at Lourdes, where he was taken by some well-meaning friends. A gift he accepted because who doesn't want a trip to France at twenty-something. His tale is
very funny.
28
I am a gay man. It is an orientation, a reality, for which I take no credit and feel no pride. What I DO feel proud about is how I have lived my life as a gay man in the destructive, homophobic society I grew up in. (I'm 66.) You say you are proud of your disability which makes no sense to me. What does make sense to me is the pride you feel in the way you have fashioned a successful life despite your disability's challenges and limitations.
Let us all celebrate how humans can take life's lemons and turn them into lemonade...now that's something to be proud of!
52
I remember in the early 2000s when a deaf lesbian couple decided to find a sperm donor who was also deaf to ensure that their children would be deaf as well. Perhaps that is what is meant by disability pride. Personally, I would call it cruel and selfish.
8
"Not everyone understands disability pride, which is apparent when a disabled person dies and nondisabled people nearly always repeat the same ableist remarks: “They are no longer suffering.” “She is now free to run.” “He is finally cured and now dancing among the angels.” I can’t say hearing these things doesn’t get to me; it does. These comments diminish the lives both of the dead and the living. Most of us are fine not running; we are not suffering, and we do not want to be cured."
So these are merely "abelist" remarks. Maybe they are actual and sincere feelings from people who are doing their best to understand.
There is something very arrogant about this opinion piece. Is it really true that disabled people "do not want to be cured?" I have had 7 major surgeries, on my feet, shoulders and heart. I doggone (not the real phrase I could use here) well "want to be cured." I want to have normal experiences, live a normal life, and have a normal life trajectory.
About the only person who "truly" understands is my wife, who lives with me every minute of every day. But other people who love me do their best, even if they can't "get it."
I don't celebrate my "disabilities." I wish they would go away.
38
There are others out there who experience problems with medical care, acceptance, and they too suffer from what Ms. Powell mentions here: early deaths, suicide, assaults, cancer, etc. I refer to the mentally ill, the LGBTQ community, and people who are handicapped but not enough to qualify for any sort of assistance. And there are the family members who suffer as they take time off from work to help care for the handicapped family member or watch over him/her.
I have an autistic brother. He's high functioning. But I worry about him because he is autistic and most normal people don't have time to try to understand him if he's upset. He's been accused of being a sex offender which he is not. I've found myself worrying about what will happen to him once I and my mother are dead and he is still alive. Not because I think he will do something bad. It's because I know that there are any number of people out there who love to hurt handicapped individuals as much as possible.
I love my brother dearly. I wish I didn't have to concern myself about these matters but I do. Please do not assume that most handicapped people have relatives who do not suffer along with them or that handicapped people are the only ones prone to suffering a premature death.
10
All people deserve respect and to be treated fairly, but I am bewildered by certain priorities of the disability community.
While arguing (rightly) for more respect, they willingly deny others the same. Most notably, their aggressive attitude toward death with dignity (I will never forget how the disability community opposed allowing Terri Schiavo to die).
The community as a whole has selfishly worked to deny people the ability die in peace, causing unnecessary pain and forcing loved ones to cope with prolonged suffering and tarnished memories. Perhaps they should treat terminally ill people with the same dignity and pride they claim for themselves.
15
I'm going to take issue with the headlines of this article. The first I was shown was "I'm not suffering, and I don't want to be cured" and the second was "Even in Grief, I still have pride".
The first isn't about disabled people not wanting to be cured. I don't think the vast majority of people with a disability would turn down an insta-cure if one was presented. It really just reflects reality: there is no cure for chronic conditions. Saying they don't want to be cured is about liberation from a life-consuming search for The One. That One Perfect Doctor, One Perfect Medication, One Perfect Therapy that Fixes Everything. It's about accepting reality as it stands, not rejecting a hypothetical. It's about making room for more in your life than just doctors appointments and physiotherapy.
It's hard when reality is accepting your limitations, especially in a world where advertisements tell us to "become an ironman, after getting a brain tumour!" or "be exceptional, always" or "he ran races, what's your excuse?". Sometimes being able to accept your reality as it is, seeing your life as still having value as it is and not in comparison with the lives of others, is enough.
I think that's what disability pride is. Believing that your life has value, regardless of how it looks to others. Because your life is not defined by your disability, even if disability defines how you live.
Just my take.
18
Be careful with this line of thinking. If disability is good, and something to treasure, then there is no point in health insurance at all. The whole premise behind health insurance is that it is better to be well than not well—and if you accept that having the flu means you are unwell and are being limited, then obviously, missing a limb or being blind also means you are unwell and are being limited.
Unless you want to try to argue that having the flu is bad but missing a limb is not. Good luck with that argument. You will promptly run into major reasoning fallacies, including contradictions and inconsistencies. The implications of this "there's nothing wrong with me" approach are socially destructive. See paragraph above.
I have a disability. I would rather not have it. What I am proud of is not the disability, because that makes no sense. For one thing, I am proud of things I earn and do, not things I am by accident. I am proud of overcoming some of my disability's limits. I am proud of finding the will to exercise even when I do not feel like it at all, and being as strong and healthy as it is possible to be given my handicap.
The whole "being disabled makes me appreciate life more" trope is a testament to one of humanity's strengths: being able to make the best of things. It is also trite. I respect the author's achievements very much. And I would not usually criticize someone for how they feel about their own circumstances. But she has invited comment by publishing.
24
@Northstar5
Between Northstar5 and the author of this article, Robyn Powell, I feel wedged between 2 articulate courageous adults. The small point of contention Northstar raises...irrelevant. I just feel like a kid looking up at people who have taken on challenges I've never thought about.
I don't know if Northstar would dismiss my line of thinking as trite (probably) but that doesn't matter to me.
A Martial Arts instructor once told me a student had to steal techniques--make a technique their own. I learned a great deal reading this article and Northstar's response. At 70 my orientation to the physical world isn't what it once was. (I generally don't think about replicating martial techniques at this time.)
But these two pieces, taken in tandem, alert my spirit to the challenge of growth, being alive, and thriving. Robyn and Northstar appear to be teachers of the first rank--Sensei, if you will. My attempt to borrow, coalesce, and duplicate some of the attitudes they have shared here seems familiar to me, although not easy...(I do get it).
The term "disability community is new to me", so I am a beginner. Thanks.
3
Thank you for a wonderful piece. I feel that the old-fashioned term: self-respect, could also be used to describe pride in one's own disabilities. Self-respect can see us through some of the toughest grief, because it doesn't rely on anyone else's viewpoint. Self-respect also tends to lead us towards respecting others, whatever their abilities. It's a term that was replaced by "self-esteem", and I feel that we have all lost an important concept by the substitution. Respect (of ourselves and others) leads us towards acceptance of reality, gratitude for the beauty in our lives, and empowerment.
5
The subhead on this story brought my reading to a stunned halt for several seconds.
1
Thank you for your point of view. Great article.
2
Thank you for your insight.
Totally agree that accepting life and death is almost freeing.
2
It would also help to establish more credibility if Ms. Powell gave some details about what particular medication was denied by United Health Care, the lack of which is alleged to have caused the death of her friend. In this case, following this link in Powell's op-ed leads to a Facebook page describing the case in exactly the same words Ms. Powell uses in her op-ed, without any more detail on the drug involved and why UHC did not cover it.
5
@Peter Blau UHC did not cover it because it was expensive. For profit health insurance companies exist to make a profit. They do not care about much else.
8
I truly admire your courage; society begs you to label yourself a victim--you refuse. I hate phrases like "They are no longer suffering." It is incredibly narcissistic because it tacitly suggests you would be better off if you were "normal". Normal people aren't social workers, attorneys, and writers. Normal people would be lucky to excel at one of those things. And suffering? Maybe from self-righteous individuals who think they know exactly what constitutes a life well lived--mostly to be like them. That is a very idiosyncratic process--unique to us all. I can't --or won't--say "You're in my thoughts." I'm in awe of your resilience and tenacity. Thank you for speaking up for so many people.
5
This writer is to be commended for helping others but I think it is important to note that physical disabilities are not the only disabilities people must face. In fact, we all, as Michael j. Fox has said, are dragging around our bag of hammers. Everyone is disabled to some degree but most people’s disabilities are not apparent to those around them. It might be a degenerative disease, an alcoholic parent, an addiction, emotional issues, low self esteem, the loss of someone dear - anything that interferes with your life. Those with physical disabilities , like myself, may be more obvious than others, but we are all part of the disabled community.
17
About 30+ years ago, while livingin Orange County, Calif., I had the unexpected opportunity to be an able-bodied practice partner at the International Wheelchair Tennis Championships.
Let me tell you, there was no pitty parade by these amazing male and female athletes. As a practice partner, it was everything I could do to keep up with them on the court. Clearly, they had strength training for upper body/torso conditioning plus, the arms and shoulders, which added to the power of their strokes. So if anyone thinks these wheelchair-bound athletes were going to play in the hit-and-giggle, moon-ball league, think again. This was a power and accuracy game for them.
There was a 2-bounce rule in their game but that was merely to account for lack of speed and maneuverability on the court. But at their international level of play, their pinpoint accuracy was a thing to marvel. It also had my tongue dragging behind me while attempting to run down those shots.
It was a deeply humbling experience being on the tennis court with these marvelous athletes. Our tennis club had wheelchair access throughout adding to the egalitarian experience I had with them.
No one whined, all were gracious in their wins and losses and no one talked about a finish line, though I suspect they will all be "leaning into the tape" when they get there.
12
A great piece. I am grateful for it. To me, it demonstrates and celebrates what being alive looks like. It is entirely honest and mature. It is graced by a spirit of basic hope, minute by minute. In response to the view that life can be/ is dificult, the answer I sensed from this ... that does deny authentic feelings ... was, So what!
I wish you all the luck in the world, but
this idea that one should be proud of
one's disability seems strange to me.
when I was young,I suffered from a
terrible stutter (and to a lesser extent,
still do now.) I was furious at being
humiliated in front of my class and
it haunts me to this day. never once
was I proud of my disability. I was
resolved to beat it and to a certain
extent, my anger helped me. I am
sorry for your losses,but I would
advise you not to be proud, but to
be angry enough to transcend it.
9
How is she to transcend a disability caused by an incurable condition?
4
After my dad became disabled, he wasn't proud of his disability. He was angry. It involved pain, loss of mobility, and frequent hospital stays. He endured a lesser quality of life. And eventually it involved death.
If you want to be proud of your disability go ahead. I would not be "proud" of my child's disability -- of my child yes; disability, no.
And if, for example, being blind is something we've come to be proud of, then we've lost our minds.
20
@KatheM - It sounds like you write from the perspective of a Currently Able-Bodied person, since you mention other folks' disabilities, but not your own. I wonder why this person writing of their pride in themselves - all of who they are - seems to strike such a nerve in you? Perhaps something pay attention to in yourself. I would also encourage to learn more about the social model of disability. I'd also encourage you to listen to the experiences and perspectives of disabled people. You are father's experience is one experience. It matters. There are many other perspectives and experiences to encounter and learn from. I'm also curious why one would need to have "lost their mind" (not sure exactly what that means) to be proud of their blindness or vision impairment. I hope you will do some more reading and learning, with an open & curious mind and heart.
3
@KatheM, Robyn Powell is proud of who she is--including (not despite) her disability. She is trying to avoid the centuries old mindset that associates disability with deep shame.
I say, good for her!
6
@KatheM With all due respect, maybe you should ask Stevie Wonder if he has no pride in being a blind...genius. I'm an able-bodied sibling of a disabled woman who's sense of self grew greater through her struggle to accept an amputation as a teen. She did endure all the anger & pain you describe; bitterness did however give way to an acceptance & a new direction in life. Clearly, Ms Powell is sayin'...its what you make of it.
3
What a beautiful, insightful, and inspiring essay.
What I'm about to propose is not at all meant to be divisive, but inclusive. It's often hard for people to understand "others" not like themselves. We need stories like this.
Here's my proposal: re-read the essay, but replace disabilities with being gay. While the story is applicable today, re-imagine in the context of the 80s and early 90s, when your friends are dying by the score, there's no cure, and you wonder "How long do I have?" You might gain a deeper and more nuanced appreciation of Ms Powell's words.
In no way are gay people disabled, of course. Though many think so-- even to the point of trying to "cure" them. We know that's not possible, and that "the cure" is always worse than the condition.
Like the writer, my "disability" turns out to be God's greatest gift to me. It's taken me places I might never have gone, introduced me to a world of people I may never have known. I think I have greater empathy because of my "otherness."
Would I take the "straight" pill if it were available? Maybe-- when I was 16, not because I was ill, but my society sure was. (I hope it' gotten better for today's sixteen year olds!) It takes a while to appreciate your gifts. Now, I wouldn't trade being gay for anything! To be "normal"? No, thank you.
It's also in this context, I believe, that Ms Powell speaks of "pride."
Yes, we are proud to be who we are. Even in a world that thinks (wrongly) it prefers we not exist.
7
@Texas
You probably did not mean that non -gay instantly translates to normal when you said you would not trade being gay for "normal". Personally not sure what "normal" is anymore or whether we can say normal at all. Does it exist? Every single person on this planet is unique with different sexual interests some identified, some not, many not fully understood or even explored since sexuality is as complex as the emotions that drive them. Everyone should be proud to be who they are because they are uniquely them.
3
"Just last month, my friend Carrie Ann Lucas died after her health insurer refused to cover the medication she needed."
That is not the mark of a civilized country. Yes, countries that have national health care systems can refuse to pay for some expensive medications for long-term use, when there are cheaper and effective drugs available. But to refuse to pay $2,000 for a short-term life-saving medication is the sign of a heartless system that puts balance sheets above lives.
It's ironic that the insurance bureaucrat's reflex denial of care led to a total cost to the insurer of a million dollars, but Carrie Ann Lucas ended up dead.
Right-wing politicians often talk about the horror of civil service bureaucrats deciding on what to fund or not fund. But those officials are trying to get the best care for everyone out of taxpayers' dollars. Private-sector bureaucrats are trying to save money for their employers, by looking for ways to deny care to premium-payers. It's what they are hired and trained and paid to do. And sometimes their work costs those premium-payers their lives, or the lives of their loved ones. I wonder how those well paid bureaucrats manage to sleep at night.
The Bible says the love of money is the root of all evil. A health care system built on greed is what America has caused to grow from that foul root. The rest of the developed world stands amazed that you don't rise up and stamp it out.
11
"There’s something almost freeing about accepting that harsh reality."
That is true when we accept any reality that we cannot affect, and it is totally freeing, not just "almost freeing".
Look up The Serenity Prayer for more on this.
7
The author speaks of acquiring health care as a problem for the disabled. It isn’t a problem unique to the disabled. That being said, our government does grant social security benefits and disability payments as well as Medicare for the disabled.
I’m not saying they don’t deserve it or maybe even need more, but it certainly shows, that as a country, we do care for and care about the disabled.
7
@DLP The NYT recently ran an article on travel trips for disabled travelers. One of the tactics shared was too avoid eating or drinking for a day before the flight because aircraft bathrooms don't accommodate them. In NYC, it is difficult to get around the city if you're not able bodied. The MTA is a joke, and I can't tell you how many sidewalks I encounter that are neglected and difficult or downright treacherous to use.
So you're right that Medicare and Soc. Security are good to have, but they're one part of a bigger picture.
8
@DLP Yeah, our country cares for and about the disabled more than, say, North Korea.
I was a Special Ed teacher for over 30 years. Government programs give disabled people barely enough to get by. If you earn more than a minimum amount, those benefits end. So, if you're disabled and not independently wealthy, you have to be poor in this country.
In addition, people with disabilities all tend to be treated as if they are mentally disabled, even if they have advanced college degrees. Look at how our current president treated that disabled reporter.
4
Well we love to pay lip service to the idea of caring. Just ask veterans about that.
2
It was truly uplifting and enlightening reading this article from such a courageous and optimistic writer .
Thank you !
May your life always be blessed with this positive perspective that emanates from your personality.
4
Two thoughts:
The richest society that ever existed could have all the health care anyone needs. Instead we keep spending billions on the military because male leaders like to feel tough.
As for losing friends, you might find comfort in 19th century writers - a short while ago, everyone lost babies, children and life- long friends. The current state of affairs is unprecedented and probably won't last.
15
"We are more likely to die because of police brutality (the rate is especially high for disabled people of color)." If one clicks through to the link, this refers to people with a mental illness in confrontations with the police. While clearly mental illness is a form of disability, Attorney Powell is blurring the facts when she says "We" are more likely to die because of police brutality, No, wheelchair users like her are not more likely to die because of police brutality, unless they happen to have a mental illness as well.
28
I mean this with complete respect to the author. I am not disabled. I have worked with disabled children and their families for decades, in the schools and regional teaching hospitals. My clients often used sign language or computers to communicate. They had very thick medical files. Most of them were very proud of their lives, and many were proud of their disabilities. But I have to admit that sentiment made me a little uncomfortable. I don’t believe anyone should be proud of something they didn’t work to earn themselves. I’m proud of actions, not states of being.
I have my reasons. It started with members of the Deaf community who refused to allow hearing aids for their children, closing doors to them. It was reinforced with the children who were so affiliated with their disability, they accepted limiting stereotypes to go with it. And it became entrenched when I saw how people could become prideful for the color of their skin, the beauty of their faces, or the wealth they were born to. My kids could DO things. That was what was important to me.
So I took a different path with my students. When they told me they were proud of their cochlear implants, I told them that it was a spiffy device - but that I admired them more for how brave they were to talk to the waitress. When they loved their new wheel chair, I admired how it made a splash rolling into AP Bio. Was I wrong? Should I have spent more time cheering them for traits they did not choose and can’t control?
56
@Student They were proud they way anyone in a marginalized community is proud - they are not saying it is a personal accomplishment, but rather that they refuse to be diminished by another's bigotry. Sometimes splitting hairs with word definitions leads to unnecessary disputes.
33
@Student
Why put such a fine point on it? It seems like you're defining how somebody else should feel, and using your position to pressure them to do it "your way." Why not let go and allow them to be proud of whatever they feel pride in? That won't diminish you a single bit.
20
@Amy. I think it does matter. Any time we are more driven by pride in an inchangable characteristic, instead of the content of our character, we create an impenetrable barrier between ourselves and those who do not share our trait. I don’t care if it’s race, gender, national origin or ableness. Be proud of what you do, how you act, and how you treat people. Don’t judge people by the presence of a cane or a limp, for good or ill.
33
@Stephen Csisizar. That is another story indeed but I am going to speak to here. The police should not be handling mental health interventions at all. They typically receive most of their training in firearms ,not in psychology. In some European countries the police are required to have a 4 year degree.In Virginia, 40% of police shootings involve a mentally ill person, much higher than the overall national rate of 25%. It is my opinion that the police should not be carrying firearms at all under ordinary circumstances.
4
@A.Nash
Thank you for this thoughtful reply.
Realize that our nephew had taken to walking the empty streets late at night because he could not sleep, and after several minor confrontations one city through the police had decided to get rid of him. Meaning get him out of this town and out of this state, where he was not a resident.
Thus being in the wrong place at the wrong time turned trespassing (maybe) into breaking and entering (definitely not). This resulted in him being jailed for a weekend and us being told that since were not immediate family, had no access to him, or any ability to get him out without a large, and unreasonable bail. Then two long years of court.
I understand what you are saying, but what alternative is there than law enforcement? He has the right to refuse treatment and cannot be forced. We walked on tense eggshells that whole time while doing our best to keep him in an apartment and generally out of trouble.
The first several officers who encountered him had training in this very issue and were great at calming him and defusing the situation. Then his condition worsened, and so did the attitude. Police here just need a high school diploma.
I have a Psychiatrist acquaintance who is horrified, like you, at the level of shooting incidents involving the mentally ill.
The Doctors tell me we are 100 years behind in the development of effective treatment.
10
Robyn - despite your disabilities you have something that most people never have.
Namely an intelligent, acutely rational mind.
With that gigantic asset you can go anywhere and do anything even if it's only on the internet.
Why would I want to spend 16-20 hours on a plane to go to Greece or China when I can do it sitting here in my chair? I can visit any art museum in 3D or climb the Matterhorn with Google Earth just sitting here. Thanks to Hawking I can even go to the furthermost star.
And you can, too.
Yes, Robyn, you have something extra special that most ordinary people will never have so keep using and exercising it as much as you can.
11
@Texexnv
I do agree that the internet now has a trove of material, but I wept when I finally visited MOMA and saw paintings I had known for years only from books.
On the internet, you can't smell the delicious smells of different cultures; you can't see the activity of moving humans or feel their warmth as the accomplish their work; and you can't hear the sounds, which are different, beginning with the human voice and language.
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I think it is important to remember that this is one writer with a disability and her views do not represent the views of all the disabled, just as the views of one black person or one white person do not reflect the views of their entire race. I am disabled. I long to be free of my disability because it makes life that much harder, especially the older I get as my arms and shoulders wear out from taking on the burdens that my legs cannot do, such as getting up out of a wheelchair. I am not offended to hear someone say that they see a person who could not walk running through the fields of heaven (even though I do not believe in heaven). I do not think that the disabled have some additional dimension of humanity or spirituality by virtue of the fact that they have a disability. In my experience, people with disabilities can be as nasty and crappy as anyone without a disability. And all of us suffer the fate of seeing those around us die, if we are lucky enough ourselves to live that long. I do not like it when one person presents as the spokesperson for all of the people in a certain category, in this case the disabled. I enjoyed her essay and found parts of it thought provoking but her emotions are not necessarily the feelings of the disabled person you sit next to on the train...
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@fireweed agreed. I feel the same as you, on this front.
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@fireweed
I too stopped in my tracks when the author stated that she is not suffering and does not wish to be relieved of her disability. I, an attorney also, have a disability that I would relinquish, gratefully, if I could. I have watched many law school colleagues go on to wealth and high position. But that's not the hand of cards I was dealt.
Without parsing the author's statements carefully, I acknowledge the need for acceptance. I also acknowledge that suffering can have spiritual benefit. I concur that others who suffer similarly can provide great comfort. But that's a far cry from embracing disability.
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Pride in how you cope, manage, deal, get out of bed every day while living with disability - that I get. But pride in the disability itself, pride in simply being disabled? That makes no sense to me. I am not proud to live with chronic illness. I'm not ashamed either. I do not see the point of being proud or ashamed of something beyond my control.
"...we are not suffering, and we do not want to be cured." Speak for yourself. Don't put words in my mouth, or the mouths of millions of others. I am suffering, and I do want to be cured.
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@Holly
Agreed. Not wanting a cure is ludicrous. Being called a survivor and a warrior is nothing but useless platitudes. I do not embrace my illness nor does it require thoughts and prayers.
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Thank you, Ms. Powell. Truly, I am appreciative.
I have no recognizable disability, aside from being severely organizationally challenged. But I spent my childhood watching my parents die. The process for both of them was protracted and enormously painful for everyone.
I connected very much to your thoughts about living a fulfilling life, filled with meaning, and living in the moment. I came into adulthood with an abiding belief that life was short, and that my most valuable possession was my time. I've tried to let that understanding be a constructive guide to the choices I make in life. For the most part, I've done well.
I also have seen similar transformations in my cancer patients. Independent of whether or not a cure is possible, most people who pass from the opaque side of their mortality develop a remarkable ability to prioritize their lives, to seek out what really matters, and to engage whatever life they have left to the fullest.
Where we are in life is not nearly as relevant as what we've overcome. And neither are as relevant as what we choose to experience, fully and completely.
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Great read. The author provides perspectives that only a person in similar circumstances could fully know. As a social worker I especially appreciate, as noted by the author, the extenuating circumstances surrounding statistics on early death from disabilities and how lack of adequate resources likely plays a significant part- as opposed to the disability itself.
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@Ken Beiner
Yes---the stinginess of government at all levels toward those who need more resources than the abled never ceases to astound and infuriate me. How can we able-bodied count nickels and apply heartless cost/benefit standards to what another human desperately needs to live a decent life or to live at all, whether medications, care, appliances, accommodations.
I pay taxes first and foremost to enable my country and community to help those less fortunate. Someday I may well need help myself. But for a rich society like ours to shave and squeeze down lifesaving money for the disabled (and for the poor as well, frankly) disgusts me.
Nobody, as the author here describes, should die early or suffer because they don't have the cold cash up front or can't jump through disingenuous hoops constructed to keep them away from the resources they need. Maybe during the Great Depression there was an explanation for this, but not since. I understand that healthcare is costly --- unforgivably so --- and the only rational reason for that is pure human greed. Our country has money coming out our ears, but we choose to hoard it, and worse, to reward the already rich with swelling troves of pure tax-free funds to distribute to their undeserving heirs. I really date this cheapskate society to Reagan, who gave social tightwads the rationales and respectability they needed to cast off the shame they deserve and be proud of their own selfishness, lack of compassion, and money worship.
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thank you
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I like your article, though I must say I'd be totally down with the idea of being cured.
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Thank you for writing this.
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People with disabilities are still not treated well enough. Not everywhere is wheel chair friendly and many people still feel awkward when meeting someone in a wheel chair. TV series did a lot to help people accept autism and they can do the same for people in wheel chairs. Pride shouldn't enter it. Pride can be a negative feeling and separate people. People are people and all should be accepted for who they are not how they look.
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@getGar
One thing that Robyn Powell is saying is that the disabled are discriminated against, made to feel disrespected and worse. She says that she will not let discrimination against her make her ashamed. She might be proud of all she has accomplished despite a disability and the consequent discrimination.
3
I am 78 and my peers are dying. Not one of them can be replaced as a person or in my heart. Age brings a new perspective to many things, including loss.
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Thank you so much Robyn! I have recently become disabled from a rare degenerative neurological disorder. Your column gives me hope, because it resonates so closely with my experience. My condition PSP does not kill anyone, but its symptoms might. Youb have been added to my list if people who manage to live wonderful lives despite having an ' untreatable' disease!
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Beautiful...I have invisible health issues. I have learned a great deal from those in wheel chairs, on walkers... Their disabilities are obvious to others, whereas mine are undercover. I have discovered so much about myself while sitting with others in an ID office hooked-up to the IV drug of the day. I try to be sensitive to all and have probably made inappropriate comments, but I really try not to....thank you for your insight!
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See the poem of the Irish-Australian poet Francis Duggan:
Death the Great Equalizer
Some die of natural causes some in a tragic way
But for every single one of us a final night and day
Without respect for the power of wealth and without respect for fame
Death the great equalizer treats everyone as the same
Without respect for anyone or creatures great or small
The billionaires of the World to the Reaper's scythe do fall
At least the one who does claim every life promotes equality
Amongst the wealthy of the World and those in poverty
Some live on to a ripe old age and some die in their prime
And some even die as children they are not granted much time
Not ageist or discriminatory in any way
He claims the lives of the very young and those who are old and gray
He's a true egalatarian of him one can only say
And for each and everyone of us a final night and day.
One might say that death enables everyone, the abled and the disabled.
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It's great when a disability lights a fire in someone, but those of us disabled whose lives never surpass mediocrity feel awful when we read essays like this one.
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@Bridgman You know, a million years from now, people on the other side of the galaxy won't have any idea who anyone now on earth is. In a very small unit of spacetime, it's completely irrelevant whether I brokered world peace, built a skyscraper, mopped floors, or managed to get out of bed and feed myself. You don't have to pull back very far (100 years from now in another country for almost all of us) for our triumphs or losses to fade, whether one is the quarterback CEO or is simply nice to one's dog.
I've decided to do what I can, take pride in it, and when I get bored with the same-o, try to stretch a bit and grab for the next piece. I met a guy once who appeared to be suffering from a severe social phobia. he made the most beautiful filligree eggs.
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@Bridgman
Comfort yourself: plenty of neurotypical able bodied people live mediocre lives by their own measures. And plenty of people with invisible disabilities too. Humility can help. If by grace you wake up in the morning, then there is hope you can do however you do - putting one foot in front of the other, or otherwise - and do what you can. Any day has some luck, and blessing, and burden. If you are really blessed, you can fight for justice. If you don’t have that energy or opportunity, you can do what you can.
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@Bridgman
Echoing Nell: Join humanity. Most of us struggle with issues that don't mean " a hill of beans" to the world at large, and our small successes won't be noted. But we can provide what we can, to those we meet.
When we look closely at some who have been brilliant contributors in unique ways, their talents did not guarantee them peace or contentment.
I hate the word mediocrity -so often it suggests that either you are either brilliant or useless - as if those are our only lots in life. As if there is a huge measuring tape tying up our lives.
If it helps remember that the NYTimes is printing her story because she
has achieved some extraordinary goals. But I doubt that she measures any of her friends in terms of their recognized achievements, but rather in what they have shared.
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Thank you for this beautifully written and insightful column, and for reminding us that there is freedom in accepting that there is love, and there is also grief. Just life. And worth it.
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There's nothing wrong with having a disability. Live YOUR life. Enjoy YOUR gifts. Don't drag OTHER people into your world if they don't volunteer to do so.
Individualism just means that we can pride ourselves on competencies - whatever they may be. It DOESN'T mean that people ought to feel shame just because they are not perfect. All of us - even the most able-bodied people in the world - are second to someone with respect to something.
19
As a younger person, I was uncomfortable around people with different abilities. Getting older brings me to the truth that all of us will, should we live long enough, become disabled. There is no “us” and “them.”
When we, as a country, fail to concern ourselves with the shameful way our society treats disabled people, we fail ourselves.
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I do not believe people mean any harm when they say "there is no more suffering" at a death. Whether physical or emotional, there is a thankfulness for the loss of pain. Of course a celebration of one's life may also be in order.
17
Beautiful essay. Thank you for your insights, your courage and your empathy. Ours is increasingly a harsh society---no amount of kindnesses by individuals can overcome systematic brutality such as we have allowed to develop in our institutions.
28
Great column to bring awareness of the struggles of disability. I admire your strength.
However, the part about the victimization of disabled by police needs to be sorted out. The link points out that those "victims" were psychologically and emotionally disabled and a threat to others as well as the responding officers. I really don't think officers go out of their way to harass the physically disabled.
Perhaps someone, the author or the editor, should have picked up on this obvious distortion of "statistics."
20
@Anne --- "I really don't think officers go out of their way to harass the physically disabled."
I agree. However, police often lack training in how to interact with people who have emotional/ mental/ psychological disabilities (and sometimes physical ones too), and de-escalate tense situations without resorting to force. This means that these people are more likely to be beaten into submission or killed because they don't act like "normal" people and the police don't know how else to deal with them.
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@Bruce
Yes, we have had this experience when caring for a nephew who was abandoned by his parents when his mental illness became obvious and violent.
Most Law Enforcement here had the training to deal with him, but some did not. We always had the fear that he would say something at the wrong time and be seriously injured, he was lucky.
The upshot is that he was arrested and it took two long years and a substitute Judge to sort it out and get him back to his parents in another State.
Consider that even though the charge was dropped the Prosecutor would not let it go, and it went on and on. Turns out he was so corrupt himself that scores of his convictions had to be overturned and delegated to others when they finally had him step aside. I learned many bitter lessons about our justice system in our continual bi-monthly long days in court. That is another story entirely.
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As a yoga and meditation teacher I strive to help people understand that they can choose how to respond to what life presents. Your essay could not have said this better. Choosing to accept and persevere is neither trivial nor automatic but your essay clearly inspires one to keep trying. Thank you for this.
36
Wonderful article. From personal experience my observation is that the general public, but more disappointing, the medical profession, view the disabled as less capable of performing both mundane and complex human activities, and thus less worthy of attention in engaging in ordinary human interaction. Insurers see little economic utility in investing in care for a person with a limited lifespan. Healthcare workers often prejudicially link physical limitations with cognitive abilities. Humanity exists primarily in the human spirit not in the physical embodiment. We are amazed at the genius of the severely handicapped Stephen Hawkings, because his success and disability seem incongruous. However, we deny the humanity of so many wonderful, but ordinary folks, who are fully capable of enjoying so much of life which is not denied them by their physical condition, but by the society.
39
Thank you for writing this column Robyn. Your words had powerful resonance for me.
I work in addiction counseling, where chronic loss is an ongoing reality for my client population. Death, chronic illness, unemployment or underemployment, incarceration, homelessness/unstable housing are part of the experience of many folks battling addiction.
Mindful acceptance and resiliency seem to part of being able to move forward and into recovery mode. This seems to hold true for clinicians working in this field as well.
31
Robyn, thank you for sharing your story. I too am passionate about disability rights. In our family we have an apparently genetic x linked mood disorder which carries a powerful stigma. I am attracted to people who have some burden of suffering because they have developed an extra spiritual dimension that comfortable people often seem to lack. It is a perilous journey to be disabled in this culture, we need to stick together to be safe.
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@A.Nash, Thank you for your comment. I couldn’t say it any better. My family has suffered from depression for eons. I understand.
Thank you Robyn. Your column was very moving.
12
@Hortencia and @A.Nash, I am glad to see mention of mental health issues, which can be as genuinely disabling as any physical condition. There is much stigma around disability in general, and certainly around mental illness, so I very much appreciate the author's passion and courage in writing about, and working for, those with disabilities. I also believe there is great value in solidarity and shared appreciation for the positive aspects and experiences.
One bit of the column that I find troubling, though, is in statements like "we are not suffering, and we do not want to be cured". I personally suffer profoundly from my chronic mental illness, and I do very much wish it could be cured. In my case, I would consider the kinds of "ableist comments" that the author mentions to be a recognition of, and sympathy for, that very real suffering.
Does all this mean that there is not a place for me, and others like me, in the "disability community"? Can I have "disability pride", while also acknowledging and lamenting the negative?
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