Tuesday, December 16, 2014


Tiffiny Carlson, a disability writer for many years including for New Mobility, says she's been "given the opportunity to help the community in an even more profound way - I became the executive director of Spinalpedia.com and the Determined2Heal Foundation, both of which were founded by my friend and fellow quadriplegic, Josh Basile."

Watch the video below showcasing Josh's story and the great work that the groups are doing to empower those that are paralyzed. This segment relates how a young group of quadriplegics and paraplegics went soaring in a glider thousands of feet in the air.

We are committed to helping the SCI community and hope that you can support our efforts during our holiday fundraising challenge.

Monday, December 8, 2014

Pardon the Tolerance

image from Boston Globe 
There was a discussion a few days ago on Facebook that followed after a liberal sort—we're talking ACLU—had posted a link about the news that the actor Mark Wahlberg had applied for a pardon for crimes he committed as a young 16-year-old.

The crimes were horrific, no doubt. A man lost an eye in one of the assaults. Nevertheless, I was surprised at the near unanimous objection to a pardon on the part of the commentators. I suspect, like the original poster, many or most of them are liberal.

Was part of it class resentment? I suspect some. As much as the next populist, I resent the ease with which money allows a person to escape many of the jump-through-hoops demanded by society. It will be far easier for rich Wahlberg to get a pardon than would have been had he still be in Dorchester working as a plumber instead of becoming a successful film star.

But crime and punishment should be about rehabilitation, except for the psychopaths who should be locked away forever. 

As far as I know, Wahlberg isn't in the tabloid news for various escapades. I think I've read he's the sort of Roman Catholic who tries to attend Mass daily. He has a family. He's gainfully employed. He hasn't been in trouble since the original crimes.

Personally, as suggested in this column from the Boston Globe (which is generally anti-pardon for the class-reasons noted above), I would have no problem with a pardon so long as Wahlberg made an apology to his victims and paid restitution to them and to the state, and I am surprised at the (apparent) source of opposition I saw on Facebook.

Thursday, December 4, 2014

Frozen Out

I'm underweight. I have little body fat. I have post-polio syndrome, one factor of which makes my body think it is 20-degrees colder than the air temperature. I wear long sleeves, a vest, a scarf, and a wool cap in a house where the thermostat is set at 72-degrees. Even on hot summer days, I do not turn on the air-conditioner until my wife comes home and say, "How can you stand it in here?"

And so I love an electric blanker. I especially loved my Biddeford Blankets, one made of plush fabric with a heating element. It could be yours too for sixty bucks at your nearest Target store. I bought it. I used it, oh, perhaps 50 days or so. It quit.

But I failed to register the warranty. And I cannot find the sales receipt.

"You can't run it on high all the time," my wife said. "You burnt it up."

"Why does it have a "high" setting if it won't work on "high?" was my logical reply.

"You just run it too hot," she replied. "Anyone can see that."

Thus, we have another conflict between logic and faith.

I'm tired of being cold. I wear a polar jacket, with a hood, in the mall. I sit next to an electric heater at home. I shiver. I hurt. I hate winter.

The good folks at Biddeford Blankets, however, have a 800-number for questions. Dare I ask them to honor the warranty I didn't bother to register?

I call. "Leave your name and telephone number, and we'll return your call."

Except when they don't ...

Perhaps I shouldn't have told them I didn't register the warranty when I left the message. That's called shooting yourself in the foot, I think. I don't know. My feet are too cold to feel anything.

But I'm an honest guy. I don't want to freeload. I did ask, fingers crossed, if they might have a problem with a particular lot number. That's all I have. A lot number. No serial number.

I'll give Biddeford another day or three, and then I'll break down an get another blanket. And I'll send in the registry card, and I'll keep the sales receipt. I suppose $60 is cheaper than driving to Key West or buying an airline ticket to a tropical island. 

Sunday, November 30, 2014

Bless You

I was "blessed" four times in the last two days, the word uttered as a pray, the stranger's hand upon my shoulder.

Being blessed is something I'm familiar with for two reasons: first, I feel blessed in my life; second, I use a wheelchair, and thus I'm obviously disabled, and there are people among the religious who feel that God acts in the material word. 

I suppose this is something controversial to discuss in an open forum. First, I would wager, on no basis whatsoever except intuition, that most of my internet friends are either agnostic or athiest; second, most of my internet friends in the disability rights movement take umbrage at being "blessed." Those in the disability activism moverment each have their own reasons, obviously, but I think I can say that the general idea of bringing the need of blessing into human interaction is that if a person (non-disabled) bless another person (disabled), the person with the disability is seen as less worthy, as needy.

It is the "charity model" of disability illustrated in a touch.

There's a measure of reality in that, but it also presumes that there's solidity of purpose when one person acts to bless and another person receives the blessing. Maybe the first person fully respects the other. Maybe the second (disabled) person feels comforted by the blessing. Maybe it's not about politics or sociology but about a recognition of the universality of human pain, human need. 

I know how I feel: I believe the person offering the blessing is reinforcing his or her own faith. I believe that person sees me as a rolling Biblical verse that references the power of God.

I told my wife of this opinion after the exit queue in the theater where I was touched three times. She disagreed, but I don't think she fully understood what I was attempting to say. Or perhaps, I agree with her sentiment that people are acting in good will. Who knows what's in another's heart? If there's ugly pity in the heart of the person who offers the blessing, I will do nothing to change their perception of me if I strike out in anger. I will simply confirm their idea that I am in need.  

And so I allowed the touches, and accepted the offered blessings in silence, and let the pilgrims move on with their lives, feeling better, or more satisfied, or fulfilled in their faith while I rolled on, with the same ever-slippery grip on infinity. 

Monday, November 24, 2014

The Illusion of Percentages

Lipton Tea
I'm no snob, about tea at least. I drink Lipton tea. The big yellow box, always buying a hundred count of the neat little tea bags.

Now I know tea snobs say tea bags contain the sweepings off the tea factory floor, but I've drank Lipton since I was a teenager, and I like it. I even like the little self-contained package, with the actual bag inside a paper wrapping. It's easy to stick one in a pocket when traveling and motel only has a room with a coffee-maker and a microwave.

However, the last 100-count package we bought had twenty-five individual tea bags wrapped in gold foil. Okay, I thought, maybe the folks at Lipton think the foil wrapping will keep the tea fresher.

That may be so, but I think the individual tea bags have less tea in them. I drink my tea from a 20-ounce clear glass bear mug. I like the color of the tea as seen through the clear glass. And of course, I like my tea on the weak side. With lemon, thank you.

Now, though, the tea in the 20-ounce mug is faint in color and tastes more like lemon. "Is it possible Lipton has pulled the ham trick," I asked my wife.

"Ham trick? What's that?"

Decades ago I remember a lobby group campaigning to allow water to be added to hams as the last step in production. "It'll make the meat more moist," was the manufacturer's line.

Of course, since the manufacturer also wanted to sell ham with a 10% water (moisture) content, it meant that for every ten hams the manufacturer was paid for eleven.

Has Lipton pulled the ham trick? I'm not sure. I only know that I now use two tea bags in my 20-ounce beer mug to get (what I think) is the same taste as before the change.

Tuesday, November 18, 2014

The Politics and Practicalities of Death

The Daily Beast
I am conflicted rather than absolute about the issue of suicide, assisted or not. I understand life can approach the intolerable. There's been more than one extended discussion since the asisted suicide of the young woman in Oregon, but my position that the state has no business in regulating suicide, assisted or not, remains unchanged.  

My main objection is the codification, which in turn places a societal judgment on who is and who is not to be considered as a candidate -- whose life is worthy of continuance. Codification of assisted suicide diminishes the value of certain lives. Codification of assisted suicide is the very apex of the proverbial slippery slope, as we see by the example of the Netherlands in particular where active euthanasia is being practiced. Any codification of assisted euthanasia cheapens my life because it codifies a value judgment on my life as a person who uses (depends upon) a wheelchair and a ventilator. Once the question of suicide moves into the public arena it becomes a political issue, which was young woman in Oregon intention. She made her death a political statement. That was her right.

A person can choose death when his or her life becomes unbearable. It need not be approved by some sort of law in the name of a so-called dignified ending of life. 

I, however, recognize that death is inevitable, and oftentimes ugly. There is an alternative, one that is reversible, if a person chooses death and then changes his or her mind. Such an alternative was written about in The Daily Beast under the (sensationalistic) title "The Nurse Coaching People THrough Death by Starvation."

That said, I am weary of all this discussion about the best way of dying: the issue we as a society should be concentrating on is how to live fully in a humane, democratic, and accessible society rather than how best to terminate the weak and the ill.

Saturday, October 18, 2014

Not Smart Enough or Brave Enough

A few days ago I thought I might have given the wrong impression on Facebook when I remarked that I had enough pills to end my life. I have no intention of swallowing them, except one-by-one, but in this discussion of assisted euthanasia someone thought I had put away a significant amount for that purpose.

No. I like life. I enjoy my life. I appreciate my life.

But that, and the continuing story about the woman with an untreatable brain tumor moving to Oregon to avail herself of the assisted euthanasia laws in that state, sparked a thought: I could move to Oregon (or Belgium, or the Netherlands, or Switzerland) and in my condition (a wheelchair user, ventilator supported), I am certain I could find a physician who would hand over the drugs needed to kill myself.

I would only need to say, "I am irretrievably depressed, and I cannot live like this any longer."

Depression would do it, yes, for me; but not for you, unless perhaps you were depressed and had no disability.

I've heard "I couldn't live like that" more than once when someone regards my wheelchair, and therein lies the rub with assisted euthanasia as it applies to certain people with disabilities. Our lives are seen as less worthy.

Add depression, and people will have no trouble signing the ticket for a one-way trip to the other side.

But if a depressed person isn't severely disabled—not rollin' around in a wheelchair sucking on a ventilator—it becomes a tragedy. There's no need for me to name a recent example, is there?

That's why I think assisted euthanasia laws are problematic, even as I have the deepest empathy for a person trapped in a swamp of desperate pain because of a fatal disease. Many in the medical field say there's no pain that cannot be controlled by medication. I do not know that from experience. 

What I do know is that I fear a physician who has no real concept of my experience or my attitude or my emotional state counseling me about the time and circumstance for suicide.

What I do know is that our federal and state drug laws are draconian. A person in severe, long-term pain should be allowed open access to whatever narcotic might help. What happens thereafter is no business of the state.

I say this recognizing that this exposes that person to abuse, even perhaps being a victim of murder, but I think the danger to the individual is far less than being subsumed into a system wherein suicide is sanctioned option and there are mechanisms for it to be carried out.