Monday, March 31, 2008

Poverty, the disabled and "personal responsibility"

Interesting article in the Sunday Globe:  The sting of poverty.  It's relevant for too many people I know with disabilities.  Here's a quote:

IMAGINE GETTING A bee sting; then imagine getting six more. You are now in a position to think about what it means to be poor, according to Charles Karelis, a philosopher and former president of Colgate University.

In the community of people dedicated to analyzing poverty, one of the sharpest debates is over why some poor people act in ways that ensure their continued indigence. Compared with the middle class or the wealthy, the poor are disproportionately likely to drop out of school, to have children while in their teens, to abuse drugs, to commit crimes, to not save when extra money comes their way, to not work.

To an economist, this is irrational behavior. It might make sense for a wealthy person to quit his job, or to eschew education or develop a costly drug habit. But a poor person, having little money, would seem to have the strongest incentive to subscribe to the Puritan work ethic, since each dollar earned would be worth more to him than to someone higher on the income scale. Social conservatives have tended to argue that poor people lack the smarts or willpower to make the right choices. Social liberals have countered by blaming racial prejudice and the crippling conditions of the ghetto for denying the poor any choice in their fate. Neoconservatives have argued that antipoverty programs themselves are to blame for essentially bribing people to stay poor.

Karelis, a professor at George Washington University, has a simpler but far more radical argument to make: traditional economics just doesn't apply to the poor. When we're poor, Karelis argues, our economic worldview is shaped by deprivation, and we see the world around us not in terms of goods to be consumed but as problems to be alleviated. This is where the bee stings come in: A person with one bee sting is highly motivated to get it treated. But a person with multiple bee stings does not have much incentive to get one sting treated, because the others will still throb. The more of a painful or undesirable thing one has (i.e. the poorer one is) the less likely one is to do anything about any one problem. Poverty is less a matter of having few goods than having lots of problems.

Substitute "health crises" for "stings" and you now know how it is for too many people with disabilities.

Consider this:  You have a normal life one day.  The next, perhaps a car accident.  Or even more likely, a visit to your doctor that brings bad news.  Or a phone call that tells you you need to discuss a medical test right now with family.  It may not even be yourself but maybe, your spouse or your child.

At first, you're in shock and going through the motions, but at least there are motions, things to do after the diagnosis, people to see, prescriptions to fill.  Family and friends are sympathetic and everyone promises to look after you.

For a little while.

Then life starts to set in.  You face an endless series of doctor visits, hospital stays, and the endless phone tags between you, your record-keepers, and your insurance company.

But it doesn't end there.

If you have a disability that restricts your mobility, there are more problems.  Perhaps you can't stay where you are.  Perhaps the insurance company won't pay for just one thing you need.  Then the bills come.  You have to move.  You can get Medicaid but not without spending down everything you worked for.

Even a "simple" condition like diabetes can unleash a long chain of consequences that can totally and completely upend your life.   A friend of mine entering college "got" Type 1 diabetes, and he has ADHD.  He left school and never came back.  One would think a diabetic could still go to school--and many do--but this really put him in a tailspin.  

I hear and know of too many stories of people with disabilities who become destitute, even when they were solid middle-class before their "event".

Life for such people is an endless series of "problems", as Karelis would put it.  I haven't read his book, but I would be very surprised if the problems of people with disabilities aren't mentioned at some point.

I have seen this first hand with my own life.  I've written before about my foster mom and her disabilities following her car accident.

When I was first brought into her family as a foster child in 1963, all of the adults in the family supported themselves.  My mom and her daughter lived on foster care payments and daycare, and my mom's son-in-law worked at Philson's, the shoe-supply factory in Blubber Hollow.  We were in rental housing, but not Section 8 so far as I know. 

At the end of my immediate family in 1994, when my mom died, all of the surviving adults (myself and mom) were on public assistance in public housing.

Part of our decline was due to macroeconomic changes (the loss of factory work and of the middle class) but a good amount of our decline was due to mom's car accident and ruptured disk that put her in a wheelchair in short order.

I was my mom's caregiver for the last three years of her life, so I know that routine all too well.  It is very easy to get behind when one problem comes right after another.

Even in my own life, I have had trouble keeping up when medical problems have to be dealt with.  When I was gradually losing my sight a year ago due to complications from my cataract implant, I was shocked when my housing unit failed inspection.  I had not been keeping up with cleaning at all.  I can only assume that I wasn't able to clean what I couldn't see, and couldn't see what I couldn't clean.  My problems crept up on me like cat's feet and I literally couldn't see them!

(Happy ending:  my sight was corrected and I managed to get my unit cleaned to everyone's satisfaction, not least my own.)

Karelis mentions the "self-discipline" myth so popular amongst politicians and professional moralists, that claims that if "people were only hard-working and personally responsible" they wouldn't be "poor".

I wish my late Catholic French-Canadian mom were here to rebut that argument.  In her absence, I'd like to tear that in pieces, but that will take another post.

Looking forward to reading the book.

Sunday, March 30, 2008

Salem Jail Visit

Salem Jail Visit 009, originally uploaded by dmoisan.

I've been very busy with four different projects for people, but I was able to arrange for several of us from the Commission on Disabilities to get a tour of the Salem Jail . The city's Dan Stanwood, local expert, led us through part of the facility for an hour.

It was a fascinating tour. The building is foreboding, as befits its original purpose as a prison (and execution site), and I don't want to diminish the experiences of the prisoners there, but it looked like a handsome building, the state of the art for its time.

It's remarkable, if horrifying, that the building was still in use as late as 1991! Mr. Stanwood knew and spoke with quite a number of corrections officers who had been working at the facility up until it closed.

I had a video camera with me, since Mike Sosnowksi asked me to tape the tour. I have not looked at the footage yet but it will air on SATV sometime soon and I may put a segment of the tour up on the web.

I have mixed emotions: The Jail had outlived its usefulness and was dangerous for both inmates and officers alike in later years.

But as I've written before, I absolutely hate the idea of the Jail becoming condos. I hate that Salem has to live off its history, off of things that other people made and left behind so that arrogant yuppie property-owners can have "history" to check off on their property values.

When I applied to move in to the building across the street (as seen in the picture above), I was told by a Salem Housing Authority representative that when that building was open for elderly and disabled tenants in 1982, almost everyone wanted to be on "the other side" of the building (the one facing away from the Jail) and it was feared, jokingly, that the building would tip over!

The shoe is on the other foot and I am bitter. Now the Jail could be "desirable", "hip", "up and coming" and most important, "historic", er. "Historic". My building will now be "undesirable" and "low income". ("Why are you here, the old people don't have jobs to go to!" "Can't we just redevelop and move you to Lynn?")

I am SO looking forward to hearing that!


My Flickr set on the Jail

Historic Salem's page on the Jail

Shaun O'Boyle's photos of the Jail

Trolleys, Transit and "History"

The Salem News has a rare editorial on public transit, "Our view: Or maybe they could ride a broom", in a recent issue.

The News saw, via a postcard, the trolley in Little Rock, Arkansas, home of President Clinton's library.  It's known as the River Rail.  The News is ecstatic:

So why not a trolley that travels up and down Canal Street from the school's Central Campus to Mill Hill at the southern entrance to downtown Salem? Or how about a loop system that would include tracks on Loring Avenue and Lafayette Street? One colleague even suggested that instead of a trolley, the route be served by a monorail.

The fact is that with gas prices continuing to escalate, no idea for getting people around the Witch City — without their having to get in their cars — should be considered far-fetched.

John Goff likes it too:

Thank you very much for your brilliant editorial in March 7 Salem News in which you advocate for resumed trolley service or a trolley shuttle to strengthen ties between Salem State College in South Salem and downtown Salem.

I also asked about the possibilities for a shuttle like this at a recent South Salem Neighborhood Association meeting. Regular trolley service would have the advantage of eliminating the need for students to drive or park and help reduce carbon emissions all while also helping to revitalize the downtown and provide more services for SSC students.

A trolley doing a loop run down Canal and Lafayette streets would make so much sense, especially when you consider that most of South Salem developed in the Victorian era as a street-car suburb of downtown Salem

With due respect to Mr. Goff, I have the deepest cynicism towards "history".  I remember seeing a photo in the Gazette of the trolley tracks on Highland Ave.--the direct predecessor of today's MBTA bus route 450--and saying to myself, "The Federal Street crowd would never support that today, unless Nathaniel Hawthorne rode the trolley, and maybe not even then!"

To my knowledge, there is no private company in Massachusetts outside the MBTA that is running true trolley service (not "tourist trolley" buses).  The National Park Service runs a trolley service in Lowell on the weekends.  (I have taken the tour and rode that trolley and had a fine time.)   Lowell is studying the feasibility of expanding their system for commuters.

Otherwise, the obstacles to a trolley service in Salem seem numerous and all but insurmountable.  The neighbors would complain.  The most obvious, and prettiest, street for a trolley--Lafayette St.--is also a part of the infamous state road 114 (the North Shore's true Number of the Beast!)  I'd be waiting for the first headline of trolley service interrupted when some dump truck brings down the overhead wire.

But it won't even get that far.  Who has the money?  The MBTA certainly doesn't, and they are historically very reluctant to run street-running trolleys as seen with the Arborway Line which no longer runs to the Arborway and may never again.  One resident, Dave Pelletier, made waves in the mid '90's by proposing that the Danvers Branch rail line, branching off the main line at Salem Depot and used for freight, be converted to light rail.  It got a lot of attention, but (pun intended) no traction.

A monorail?  Seriously?!!?!

I've suggested myself that the 455 bus, busiest of all routes in Salem, serving downtown, the college, Lynn and beyond, become a trolleybus similar to the routes in North Cambridge or the Silver Line.   There's still the overhead wire problem, but the Silver Line vehicles are dual mode diesel/electric powered and the technology seems to be well-proven.  I've ridden the Silver Line myself and it would be very well suited to Salem.

It may not be historic, but it would be very functional.  Therefore it won't happen.

Not to misunderstand me, but if the trolley tracks still existed on Highland Ave., I'd be all for restoring the service.  I would be delighted to take a trip to Vinnin Square or Market Basket via trolley. 

But I am deeply cynical and mistrustful of people like the Salem News and Mr. Goff who seem to only want "historic" things like trolleys to boost property values.  In the end, it would be much cheaper for Mr. Goff to buy tickets for Salem State students to ride the Salem Trolley.  Their trolleys only look like "real" trolleys, but for Goff, and the Federal Street/Salem Common people, that's all that matters.

It will look historic and boost their property values.  That's all that matters to them and the News.  Not functional transit and retail that would actually be good for downtown and historically authentic.

The same people who love history so are those who killed the Salem Depot project.  We could have had a new train station 5 years ago.  The Federal Street crowd killed it.  During the courthouse meeting a few weeks ago we learned that there is no funding in the current MBTA 5 year capital plan for a new station.   Salem has a rich history of rail transit.  Where was Mr. Goff?

All "history" really is in Salem is property values.  This Salem News proposal is no different. 

Thursday, March 13, 2008

Governing with an Invisible Disability

I almost never comment on national politics in this blog, but the situation in New York has put one man with a disability front and center to me.  Governor Elliot Spitzer has resigned, due to his alleged sexual misadventures, and his lieutenant governor, David Paterson, will assume the governor's post.

Paterson has been legally blind since infancy.

In an interview with the New York times, Paterson says:

But I play basketball, and I’ve done things that people with my vision aren’t supposed to do. I’m in this interesting sort of zone between the sighted and the unsighted, and have never really met anyone who I visually relate to, I’ve never met anyone who is kind of like me. ...

My truest disability has been my ability to overcome my physical disability. So in other words, as soon as people see that I can be independent, then they hold me to the standard that everyone else is. So I remember once I told the airlines that I had a sight problem, and they put me on this bus to go to a hotel because there were no other flights out of the airport that night, and I gave up my seat to everyone got on and they passed me, and then like this 90-year-old woman, who was trying to get up the steps, and I couldn’t take it anymore so I helped her up the steps, gave her my seat and took another seat. First stop, the bus driver tells me to get off. And I know that he’s doing this now because he thinks I have no problem. He goes, “Go that way.” And I almost fell in the wishing well in front of this hotel. That’s because he saw me able to fend for myself.

I'd like to meet Mr. Paterson, because I feel the same.  I too am in a twilight area between the able bodied and the disabled.

I have a hearing loss, and ADHD, and I have been fighting the ups and downs of low vision all my life.  I have had people tell me I'm not really disabled, and people who've patronized me because I "looked like a special-needs case."

This made me so bitter for a time that I wrote a webpage about this in the early days of the Net, the Invisible Disability Page.   The essay is perhaps more angry than it should be 10 years afterwards, but I heard from a lot of readers who immediately identified with me.

The experiences I wrote about, and the experiences of Mr. Paterson, are very familiar to those with disabilities, especially hidden disabilities like hearing loss or fibromyalgia or any of the mental disorders.

People without disabilities have a fixed conception of people with disabilities.  They are either heroes, as I've wrote before, or they are pitiable.  If a person with disabilities does a thing that they aren't "supposed" to do—they are not "disabled".  Paterson wasn't "supposed" to be able to see that old woman trying to get on the bus.  He wasn't "supposed" to be able to play basketball.

When I was a young preemie baby with multiple health problems, I wasn't supposed to be able to live outside an institution.  Wasn't supposed to be able to walk or talk or read.  Yet I learned to read at a very young age and I learned to take apart things (not with my mother's knowledge!) at age 3 and that is why I have the coping skills to use a computer and become an IT professional.

But we pity people who don't "overcome their disability".  People used to, and sometimes still do, compare me with other disabled people.  "Don't complain because that other guy is in a wheelchair and is worse off than you!"  I'm a proud man not much for pity, but really?  That's a race to the bottom I don't want to win. 

I have close friendships with people who are sightless, those with muscular dystrophy, stroke victims and brain injuries.  I don't consider myself "better off" or "worse off" than they are.  I don't feel sorry for them, nor do I worship them because they're "role models" for their conditions;  each of my friends has challenges of their own.  I look out for them, they look out for me, but always as people, not for collections of medical conditions or "heroes" or whatever the conception of people with disabilities is at the moment in the popular culture.

Like Paterson, I cope as best I can with my conditions but there are still times that bring me to tears.  Once, I was at a friend in the Barnes & Noble coffee bar talking.  One man went up to us and told me to keep my voice down, he could hear me from several seats away.

I don't knowingly raise my voice to be annoying in a public place.  My hearing loss makes it hard sometimes to modulate my voice to a good level, and I had been focused on my conversation, as one would with a friend.

I left in tears. 

Another time, I was waiting for a bus.  It was morning and the light, as is often the case where I was waiting, made it hard for me to see when and where the bus was coming.  I had lost my attention for a moment—remember, I have ADHD—and my bus had just appeared right there.   In those days, I could not read the electronic signs on the buses at that time (this was in 2001 and the signs on the old RTS buses were unreadable and often broken).

I panicked and ran on the bus, not seeing the woman waiting next to me.  I'm blind in my left eye and didn't see her at all.

Bus driver tore me a new one;  I was inadvertently rude.  I had not gotten up that morning just to be rude to someone, but that is what had happened.

There are those incidents, and many others, that remind me, sometimes cruelly, of the limitations I have.  The fact that I can only recount a few such incidents is due mostly to the people I surround myself with, at both SATV and the Salem Commission on Disabilities, who have provided me with a niche I can live in.

Paterson, at 53, has had the time and the opportunities to find a niche and coping strategies that he uses in his daily life.  Now, as Governor of New York, he'll have to use them all and then some.

I wish him the best of luck.

More:  How a Blind Man Will Lead a State - Well - Tara Parker-Pope - Health - New York Times Blog

Sunday, March 9, 2008

T bus driver forgets to stop

The News reports on a T bus driver who tried to go around traffic on Norman St. and nearly ran into someone pushing a baby carriage.

The driver did not try to stop:

"He said that he couldn't stop because a passenger stood up, and it would have caused the person to fall or be injured if he stopped," [Officer] Rocheville said

The time of the incident was not given, but the bus is almost certainly the 456, 450 or 465, all of which end their trip by going left from Norman St. to the stop at Washington St.  (the old Michaud bus stop) where many people alight. 

A lot of people stand and prepare to get off when the bus approaches Washington at Norman.  Passengers are supposed to stay behind the white line;  most do, some do not.  (I almost always get off further up Washington at the courthouse, but I am polite and don't go up the white line until the bus stops and the door opens.  And I always say please and thank you.)

As one might expect, T drivers have widely varying degrees of competence.  Fortunately, I can count on one hand the number of really bad, rude, insensitive or incompetent T drivers I've encountered.  But I have run into a few drivers who've let the bus drive them rather than the other way around. 

Perhaps I have run into this driver.

MBTA bus driver cited by police -, Salem, MA

Finding a Place for the New Senior Center

[Salem Council on Aging at Broad St.]

For at least the past 20 years, Salem has been trying to find a new home for its senior center, which is considered small and inadequate by the standards of other senior centers in the area, notably Peabody's Community Life Center.

After Mayor Driscoll tried, and failed, last year, to get an agreement to relocate the center to the old St. Joseph's Church (a topic worth a post in itself), several other candidate sites have been put forth, as mentioned in "Mayor floats proposal for community center" - Salem, MA - Salem Gazette.

The mayor has put forth a very tentative proposal:  North Shore Medical Center will build a medical office at the old Sylvania site at Boston and Bridge (long vacant since the Federal Street Neighborhood Association chased off prospective developers with lawsuits.)  The Senior Center will be on the first floor of the new development.

This hasn't sat well with everyone.  Teazie Goggin, of the Senior Center Committee, wants a standalone senior center located on Memorial Drive next to Camp Naumkeag, where a playground accessible to the disabled is now located.

One site is not on anyone's list:  People on Salemweb, as well as Salem Politics have promoted the school at St. John's Church at St. Peter's St. as a slamdunk for the senior center.  The fact that it hasn't made anyone's short list is seen as a conspiracy between Madame Driscoll and unnamed developers.

If only. 

I'm no Mr. Sunny.  Cynical, I will gladly believe any Salem political conspiracy presented to me, at least those that aren't already in my head, but I don't think this is the reason.

I've been in St. John's.  I was a member of the mental-health clubhouse Pioneer House in the early '90s.  At the time, their offices were in the front half of the school.  The back part of the school was used by the Massachusetts Department of Mental Health for a crisis center.  (I was there, too.  Please don't ask.)

Almost none of the school is handicapped-accessible.  Only a small room off the main entrance is level with the sidewalk (and used for bingo overflow).   The ground level of the school has steps going up from the main entrance.  The large auditorium has steps into the building, steps up to the lobby, and steps down again into the auditorium itself.  There is a complete kitchen and cafeteria in the basement level, but there are no elevators.

St. John's School was built in the same era (late '40s-early '50s) as the city's Carlton School.  But in the late '90s, when that school needed renovation, it was deemed so expensive that the school was demolished and a new school built on the site. 

St. John's has not been used as a school for at least 20 years if not longer, and it has not been occupied for the past 8 years.  It isn't an especially old building, but time and newer standards have not been kind to it.

People who propose St. John's seem to think that we can just cut a check to the Archdiocese and bring out the U-Hauls.  

That's far from the case.

The lack of accessibility stops this one cold.  You don't need to be using a walker, a cane or a wheelchair to be put off by this idea.  I've written about my own bad experiences with steps, and there are steps everywhere in the building!

In fact, the auditorium was once used as my precinct's voting site, but is no longer (requiring over a mile's walk on my part to Salem Heights), due to state regulations about voting accessibility.

Making that building accessible would require more money than almost anyone, including the Archdiocese, could or would spend.

This is to say nothing about parking:  The church there is still open and still in use for Sunday services and Friday bingo.  The city and St. John's would have to coordinate activities carefully.  St. John's has been very aggressive in protecting the use of their parking lot, with very good reason, and have regularly attended public meetings affecting their neighborhood.  They are not by any measure absentee owners, and this could not go anywhere if the church doesn't want it.

St. John's just isn't going to work, and I can only think the city has seen the same things I have--or they should.