Wrexham Lager Company

Interesting story today on the BBC website about the sale, on Ebay, of a Victorian brewery chimney once belonging to a Wrexham brewery company.

 http://www.bbc.co.uk/news/uk-wales-north-east-wales-15474230

Wrexham was known as a 'lager town' dues to it's good supply of mineral rich water, in the 1860s it was home to 19 collieries. The most famous was the Wrexham Lager Company, registered in 1881, which exported lager around the world. Allegedly, a stock of Wrexham Lager Bottles were found as far away as Khartoum in the Sudan, discovered in General Gordon's palace.

The company was also recently in the news as the lager is set to make a comeback in a new micro-brewery

http://www.walesonline.co.uk/news/local-news/wrexham/2011/07/15/wrexham-lager-set-to-be-brewed-again-91466-29056513/

The records of Wrexham Lager Company were catalogued as part of the Powering the World project and are available to the public at Wrexham Archives. Highlights include brewing books and promotional material. For more detailed information on the contents of the collection see an earlier post here by Robert Evans who worked on the collection.

Lives Worth Living

Thursday night, Lives Worth Living, a documentary film about the history of the disability rights movement will be broadcast by PBS. The advance reviews have been outstanding. The film maker, Eric Neudel, has received many awards. Beth Haller, author of Representing Disability and an expert on the mass media, was "completely wowed by this powerful documentary that packs 50 years of disability rights history into 54 minutes." I will not be able to see the film Thursday but I am sure PBS will rebroadcast it. I urge all those with even a passing interest in disability rights and history to watch the film. I for one am deeply moved when I see disability activists from the 1960s and 1970s. For me it is like looking back in time. I get to see the old hair styles, clothes and terrible wheelchairs produced by Everest and Jennings. If this sort of imagery is interesting check out the Disability Rights Education Defense Fund You Tube videos on line.

More on Dr. Oz and Assisted Suicide

Stephen Drake at Not Dead Yet has put up another post about the Dr. Oz show. He refers to me and provides a link to my post about the Dr. Oz show. For this I am very grateful. It is very important that people read what Stephen has to say. He has been on the front lines so to speak for quite some time and Not Dead Yet is needed now more than ever. The Dr. Oz show highlighted this in spectacular fashion. Drake and Diane Coleman are forward thinkers whose voice needs to be heard. For instance, Drake anticipated the Dr. Oz show was going to be hopelessly biased in favor of assisted suicide. This has not been a good week or two for disability rights. We have the Dr. Oz show pushing assisted suicide and Mayor Bloomberg spouting off about the "dangers" of having accessible NYC taxis.

In an effort to reaffirm the rights of people with a disability and for the skeptics out there who may think I was exaggerating what I wrote about the Dr. Oz show, below is part of what Drake posted at Not Dead Yet. I had not met Danny Robert and Nadina LaSpina before last week and was duly impressed. I think their take reinforces what I wrote and exactly why Not Dead Yet is needed. I urge all to read the final paragraph very closely.


Bushwhacked in the Land of Oz

Danny Robert & Nadina LaSpina

Wednesday was a dark and rainy windy day here in the Big Apple. We were invited to be part of a taping for the Dr. Oz Show on the topic of assisted suicide. Our car service pick up was scheduled for 7:15 AM. We couldn't find the van which was parked far from our door and got soaked but we got to the accessible entrance to 30 Rock before 8:00.

Julie Maury, Bill Peace, Hope Derogatis and Ari Ne'eman, all people with disabilities and disability rights advocates, were already there. We had each been interviewed by producers prior to being invited to appear on the show. We were directed to a large elevator to the sixth floor where we all showed our IDs and were given our tickets. We were received very cordially, with big bright smiles, by the production staff who all looked like high school cheerleaders. �Are you excited to be on the show?� one of them asked. �As much as I am when I go to the dentist,� Nadina answered.


Though we had never seen the Dr. Oz show, we expected it to be low quality, shallow and (especially having read Steve's blog) extremely biased. But we had no idea of how great the bias and how blatant the hostility that awaited us in Oz's studio would be.

We were brought back to the elevator and then escorted into a small �holding room." With some difficulty, we all squeezed in. Dr. Byock, a palliative care doctor who opposes assisted suicide, stopped in to introduce himself and we all pleasantly shook hands. He was scheduled to be on the small expert panel, and we were scheduled to be in the pro-or-con segment of the audience.

We talked among ourselves, deciding who would make which point. Very naively, we thought we would all get a chance to speak. Then a young man, accompanied by someone with a video camera, entered and introduced himself as Greg. He said he was a producer and asked us to articulate our opposition to physician assisted suicide. Each of us had something to say and he listened and asked questions. He explained that in the first segment of the show, Dr.Oz would bring out his special guest, Montel Williams, who would explain why he is in favor of assisted suicide, then Dr. Ablow would argue against, and then a woman with ALS would be brought out. Greg asked that we not interrupt or heckle, and that we would get a chance to speak after the woman with ALS.

Montel gave a dramatic performance, grabbing his legs from time to time while he spoke, his face contorted in pain. He said he wants to have a way out when the pain gets unbearable and he wants to die with dignity. Dr. Ablow gave some good arguments, saying "I would never legally allow physicians to decide who should live and who should die... physician assisted suicide is a slippery slope..." But right from the start it was very obvious that Dr. Oz and most of his audience were not interested in hearing any arguments against.

Then Dr. Oz introduced Dana, an African American woman in her late 40s or early 50s with ALS. Her attendant rolled her to a spot right in front of the panel. She sat in a manual chair, somewhat reclined, wearing a ventilator mask. A video played on the big screens, showing Dana before tragedy hit, healthy, strong, athletic... (very exploitative). Then the ventilator mask came off (the ventilator alarmed briefly) and Dana began to speak. She said she had been living with the progression of ALS for 8 years and she was tired. She hated having to depend on others for her care and she couldn't take it anymore. She said she was depressed, lonely, had no friends left and she wanted to die. Nadina and I looked at each other and said �that's why she wants to die.� Nadina quickly jotted a note in preparation for her comments.

As Dana spoke, the sighs and the sniffles from the audience kept getting louder. The cheerleaders went around with boxes of tissues, the bright smiles on their young faces now replaced by mournful expressions.

Dr. Oz asked Dana's son how it felt to live with his mom. He said it was sad and that, though he didn't really want her to die, he also didn't want her to suffer anymore. Dana's daughter said: "It's heart-breaking, unbearable to watch her suffer. She's had enough." Dana's sister, who has her health care proxy, reiterated: "She can't take it anymore. She's suffered enough." It was obvious to us (but I guess to no one else) that the family had �had enough.�

Greg had promised that after the break, we would have a chance to speak. After we heard Dana, we decided that I should go first, since my physical condition is, outwardly, very similar to hers, and my need for a ventilator is actually greater than hers. So I told my story, including my MS diagnoses, the break up of my marriage, how bleak the future appeared to me then, and the resulting near-suicidal depression. I said how glad I was that no lethal prescription was available for me then. I said that meeting disabled people and becoming part of an activist community got me out of the depression. That I fell in love with Nadina 18 years ago and, in spite of my losing function and at times becoming depressed, I lead a full, rich and very happy life.

Nadina picked up here and said that losing function often is accompanied by temporary depression, and that having available a lethal prescription would be very dangerous for someone with a progressive disability. Then she started saying that assisted suicide was usually presented as a �choice for the terminally ill,� but here we were talking about people (Montel, Dana) who were not terminally ill but had disabilities. Dr. Oz didn't let her continue. He quickly walked away with the mike, while Nadina yelled �I'm not finished.�

During the break, Nadina complained to Dr. Oz that she had not been allowed to speak. "I'll come back to you," he said. But he never did.

In the next segment Dr. Oz brought on two more panel guests, Dr. Ira Byock and Barbara Coombs Lee from Compassion and Choices. Dr. Byock was very good, stating there was no need for assisted suicide given the availability of good palliative care. He pointed out to Dana that she could refuse treatment. He did so in a very gentle way. He asked her: �do you want to tell your doctors, maybe next time you're hospitalized with pneumonia, that you'd rather not have them do anything, let nature take its course?� (Maybe not his exact words, but something like that). Dana did not answer. Dr. Oz quickly stepped in. �Let her answer� Nadina yelled out, �she doesn't want to die.� But Dr. Oz had quickly changed the subject.

Montel kept repeating he wanted to maintain his dignity. A few times we yelled out �What do you mean by dignity?� and �Do you think we have no dignity?�

Barbara Coombs Lee didn't say much. She didn't need to. By the time she came on, the argument in favor of assisted suicide had been completed (if there ever was an �argument� � from the beginning it was clear which side Dr. Oz was on and that the show had been scripted). Dr. Ablow was booed a few times. Dr. Byock was booed when he said, "We're not talking about choice but about control. You want to make sure you die with your boots on and make up."

Every time a new segment started, Dr. Oz would say things like: �The question today is: do we have the right to end our own life if we're suffering?� or �if our quality of life has deteriorated?� On the big screens the question was: �Do you think you have the right to end your own life?� (just as sloppy and as the show�s online survey, conflating suicide with assisted suicide, conflating the right to refuse treatment with assisted suicide).

The final segment was supposed to be questions and comments from the audience. We were divided by an aisle into pro and con. During the break, Nadina managed to get the attention of the producer, Greg, who interviewed us before the show. �Dr. Oz didn't let me speak,� she told him. �NDYers have a unique perspective. We want to be heard.� He answered: �I'm sorry.�

Dr. Oz let a right-to-lifer speak briefly. He called me (Danny) a hero. And Montel replied: �let's not pit patient against patient.� Julie yelled out: �We're people not patients�, but without the microphone, none of us could be heard. A hospice nurse spoke against assisted suicide, mentioning how a woman's life was prolonged long enough for her to hold her grandchild in her arms. But most of the comments were from the other side of the room. Horror stories about people made to suffer, told by someone other than the person, and you couldn�t tell the real cause of the suffering.

Nadina, Julie, Bill, Hope and Ari kept raising their hands but Dr. Oz totally ignored us. One guy said: "These Not Dead Yet members are selfish. They don't care about people suffering. They don't want anyone to have choice.� We yelled out �It's the other way around.�

Dr. Oz kept ignoring us. But at one point, he was right next to Ari and Ari had his hand raised right in front of Dr. Oz's face. Dr. Oz asked him: "Are you right to life?" Ari answered: "No, I'm with the National Council on Disability.� Dr. Oz let him speak and Ari was great. He gave some statistics about Oregon, and even mentioned the Latimer case, the Canadian farmer who got a lot of support from the assisted suicide movement when he was prosecuted for murdering his 12-year-old daughter with cerebral palsy.


We tried after the show to reach out to Dana. Julie tried to catch up with her and her family, but was pushed away by Dr. Oz's production assistants. All of us NDYers were extremely frustrated and agitated. We all agreed we had been setup and just used as window dressing.

That audience was a microcosm of our society. Most every one in that audience was convinced that disability is a fate worse than death. Most of those in favor of assisted suicide thought we were selfish for wanting to live no matter what. Others, like the right-to-lifers, sitting along side us, saw us as heroic and saintly for putting up with what they imagined was great suffering and not succumbing to sinful thoughts of suicide. Sitting in that studio, we saw more clearly than ever how very important Not Dead Yet's work is and how extremely difficult.

Bloomberg Rails Against Accessible Taxis

I have never been impressed with Mayor Bloomberg. But in the past week I have gone from unimpressed to deeply annoyed if not angry. It is clear to me that Bloomberg is desperate to keep the inaccessible taxi of tomorrow as the NYC taxi fleet. If he is successful I will be unable to hail a cab in NYC for the next 10-15 years. Bloomberg words, his anti disability rhetoric, is so far off base now it is hard to fathom. Someone needs to tell the man the ADA in this case is clear cut--transportation must be accessible to people with disabilities. The Feds made that clear but Bloomberg failed to take note Bloomberg I suspect may be trying to play good cop bad cop with David Yassky chairman of the NYC TLC. This week Yassky wrote that he does not think the TLC is violating the ADA in spite of the fact less than 2% of taxis are accessible. He did however acknowledge city officials "cannot ignore the possibility that a court order will at some point require a significant portion of the taxi fleet to convert to accessible vehicles". In stark contrast Bloomberg has waged a media campaign against accessible taxis. His words and actions are objectionable and insulting. He makes it sound as though if taxis are required to be accessible the entire NYC taxi system will collapse.

So what has Bloomberg said this week? Among the low lights:

The dispatch system will work. He expects people with a disability to call the TLC who will dispatch one of the 231 accessible cabs in the city. Bloomberg thinks 231 accessible cabs is adequate and that a dispatched cab will arrive promptly. Give me a break. This might work in the middle of the day in August when the city is empty but I would not expect a cab to arrive promptly if at all on an ordinary day. Forget trying to get a dispatched cab during rush hour, at the end of an event, or on a busy weekend.

The suspension system on the accessible cabs is inferior and dangerous. Accidents to non disabled people are inevitable and the city will be deluged with law suits. According to Bloomberg "The suspension is a lot worse and its harder to get up and pay the cab driver and get in and out and that sort of thing". When I read this I almost laughed. The issue of safety was used for decades to bar people with a disability from schools, buses, planes, trains, concerts etc. This new twist is preposterous. The ADA is clear--public transportation must be accessible

New York City is unlike any other city in the country. Bloomberg said "it just doesn't work in a city like ours, and I don't know that the U.S. Attorney General understands how people live in the city and the traffic patterns and that sort of thing". Traffic patterns? I think a grid system is pretty basic. And how I wonder is it that other cities with far more complex traffic patterns have accessible cabs and cabbies that actually stop for people with a disability. London and Dublin are two such cities.

The passenger in accessible cabs sits far away from the driver. Tips will be radically smaller because of the distance. According to Bloomberg "When the cabs are big enough for a wheelchair a lot of cabdrivers say that the passengers sit farther away and they can't establish a dialogue and they get lower tips". The distance is also a grave danger as well. Bloomberg maintains "You know, there's so much more pace between the backseat and the divider, you're going to have people getting hurt". A dialogue with a NYC cab driver? Who is Bloomberg trying to kid? As for the size, Bloomberg makes it sound as though the accessible cab is the size of a tractor trailer. Preposterous.

I saved the best comment for last. Bloomberg: "You can't take a wheelchair out into the street and try and hail a cab". What? Exactly where does Bloomberg expect the human beings sitting in a wheelchair to hail a cab? I am sure he ever seen a person navigate the streets of New York City using a wheelchair. I am in the street all the time. When I park my car mid block and walk to a muni-meter, fail at hailing a cab, go an entire block in the street because a curb cut is blocked or not present, avoiding construction etc.

I hope Bloomberg is desperate. If history is any indication, he sounds like former Mayor Koch. The closer the city came to being forced to make the buses accessible the more obnoxious Koch became. And Koch was the typical New Yorker--sharp witted, opinionated, and wrong. Koch's anti disability rhetoric was at least creative in retrospect. Bloomberg;s anti disability rhetoric lacks any creativity, substance and relies on antiquated bigotry. Bloomberg is very much out of touch with disability rights. Indeed, I doubt the man even knows what the term means. I suspect our billionaire mayor's mind set is stuck in a charity model of disability where laws like the ADA can be easily ignored. I sure hop the Feds will remind him that people like me have civil rights.

Dr. Oz on Assisted Suicide: A Train Wreck

Last week I received an email from Stephen Drake, research analyst, for Not Dead Yet. He wrote that he and Diane Coleman might be on a syndicated television program called Doctor Oz. The subject was assisted suicide, not exactly the usual afternoon television fodder. To say I was skeptical would be too generous�daytime television is not exactly known for quality programming and I had never heard of Dr. Oz. As it turns out Drake and Coleman could not appear. I decided to attend knowing some members of Not Dead Yet would be present as well. I had three concerns: first, the daytime television model is for tear jerking, maudlin depictions of any issue and this would undermine any serious discussion. Second, would the show use people with a disability as mere window dressing for the viewing audience. Third, would the show be grossly biased. My concerns were well placed. The taping of the show was in my opinion a train wreck. It was an amazingly horrible experience. All my concerns came to fruition. In fact I would go as far as say the show, its host and producers were unethical.

As part of the expert audience, prominently sitting in the center of the studio, I did not say a word. It was very clear from the opening that my views were not valued. Yes, I was indeed window dressing. The so-called expert panel was hopelessly biased in favor of assisted suicide. Any opposition to assisted suicide was token at best�the minimal required that gives the appearance of being unbiased. This role was performed, scripted perhaps, by Keith Ablow who seemed to delight in upsetting people. The audience became hostile to any semblance of opposition to assisted suicide and was vocal about it. Worse yet, they used a highly emotional, think tear jerking, style to move the audience. The message was clear: disability is a fate worse than death and that assisted suicide is the most humane thing available to us. Out of the goodness of society�s collective soul the terminally ill and all those suffering should be put out of our misery.

The taping of the show made me feel like I was in a time warp�think Jerry Lewis telethon at its worst circa 1960. I fear I witnessed a raw new world emerging that I suspect reflects middle American values. It was ugly and I was forced to envision a world in which the ADA was never passed into law, disability rights did not exist, the medical model of disability was the only model, and equality was given out in small doses to appease pesky crippled people and make the almighty normal bipedal humans feel better about themselves. This ties directly into the push for assisted suicide laws and the serious threat such laws are to those with a disability and other marginalized people whose life is not valued.

I know daytime television programming is about entertainment. A sober and detailed discussion was not what I expected. But I had no clue just how bad the show�s taping would be. If possible it set an all time low. It far exceeded the very worst I could have possibly imagined. In this regard, Stephen Drake�s post, �Media Alert�Looks Like Dr. Oz is Planning Slanted Show on Assisted Suicide�, at the Not Dead Yet blog was prophetic. Most of the expert panelists were in favor of assisted suicide. Little time was devoted to rational reasons why such laws are in fact dangerous. Montel Wiliams, vigorously for assisted suicide legislation, exemplified the dichotomy between those for and against assisted suicide laws. Advocates for assisted suicide used highly emotional arguments that were very effective and touched the hearts and minds of those in the audience. Do we have the right to die was Dr. Oz�s refrain. The precious little time allotted to those opposed to assisted suicide were used as the veritable straw man--the downer who poured water over the parade toward assisted suicide legislation.

I have thought a great deal about what took place at the taping of the show. It is clear to me now that the show was well scripted. A very clear plan existed. The emotional argument for assisted suicide was to be pushed as hard as possible. This would whip up the audience and lip service would be paid to those opposed to assisted suicide. The audience reaction would be visceral and nasty to any nuance or balanced point of view. The goal of the show was to illicit a strong emotional response. And here is where I think the host and producers were unethical. The star of the show�a deeply depressed black woman with ALS accompanied by a home health aide, her two children, sisters and mother. This woman was used, exploited really. She was the archetype for why assisted suicide legislation should be passed into law now. She was portrayed as trapped in a body that was failing and would continue to fail. Huge photographs of her in an athletic uniform were used to juxtapose her sitting in a wheelchair, respirator dependent-a fate worse than death. How could society be so callous as to deny a release from her suffering. The host ever so sincerely asked her children would they support her mother if she wanted to use assisted suicide. Tears flowed, the audience was broken hearted and angry. Let this woman poor die. Pan the dejected audience, go to commercial, be sure to include other people with a disability in the camera frame.

The thought that I was a part of this show makes me feel like my humanity was violated. I am also deeply worried. There is a serious push to pass assisted suicide laws in the Northeast. Shows like Dr. Oz will surely be used by well funded groups like Compassion and Choices when they give presentations. The visuals and emotional power of such tear jerking stories cannot be dismissed. It is powerful stuff. It is also grossly misleading. While others will be moved to tears this is what I was thinking; how many people with ALS, in the exact same condition as the woman on the show, are content and leading rich and full lives? I would venture to guess the vast majority. I am not dismissing the serious nature of ALS�it is an inevitably fatal condition. But why is it this woman that appeared on the show is applauded for wanting to die and not adapting to her disability? She is the tragic hero while the person with ALS and all those who adapt to disability are not supported or given any respect. Social supports for people with a disability that want to live a life that includes the mundane, a job, family, access to mass transportation and a decent home are given begrudgingly. These people are difficult, a drain on the country�s financial resources. No wonder I have not felt equal since I took my last step when I was eighteen-year old.

What the audience failed to learn was the laws for assisted suicide in Washington and Oregon have taught us that people do not choose to die because they are in pain. And the show clearly led people to believe people with a disability are in pain and hence should have the right to die. I believe in the exact opposite: we all have the right to live. The reality is people choose to die because they believe they have no dignity and fear being an economic burden on their loved ones. This is not a failure of the medical establishment (we are all going to die afterall) but rather a social failure. We fail to support the vulnerable. And like it or not I am part of that vulnerable population. Many good things have come as a result of my paralysis and vulnerability. I know that dignity and quality of life are extremely subjective concepts. I also know people see me and think they would rather be dead than paralyzed. Some are even willing to share this sentiment with me. Thus I am no different from any other person with a disability. And we people with a disability desperately need to get our act together. Show like Dr. Oz are misleading and dangerous. Our voices need to heard, our existence valued.

Waddle Fans

The Waddle Turbon Fan, location unknown, c. 1930. Carmarthenshire Archive Service

Waddle Patent Fan, location unknown c.1930. Carmarthenshire Archive Service

These photos show the immense size of Waddle centrifugal fans, some of the larger ones were 40' in diameter. These fans were designed and manufactured by the Waddle Engineering and Fan Company Limited, in Llanelli, Carmarthenshire. They revolutionised colliery ventilation and were supplied to coalmines throughout the British coalfield, as well as overseas. 

Carmarthenshire Archive Service holds records of the company, including photographs and other illustrative material, correspondence, technical plans, wages accounts and papers detailing production methods and costs (ref no WAD). The Richard Burton Archives at Swansea University also holds a collection of technical drawings (ref no LAC/119)

NYC Taxis, the Mayor and the U.S. Attorney

Sunday October 16 the New York Daily News published an editorial that took me aback--"Mayor Bloomberg Must Make the City's Taxis 100% Wheelchair Accessible". A few days earlier the Manhattan U.S. Attorney, Preet Bharara filed court papers that the government agrees with disabled activists who have sued the Taxi and Limousine Commission. In no uncertain and in unusually blunt terms Bharara wrote the TLC cannot continue to violate the ADA. The U.S. Attorney's remarks are out of the norm and are without question the strongest criticism of the mayor and the TLC to date. At present, the city does not require taxis to be accessible. The NY Daily News noted that "there are 13,237 yellow taxis; 231 can accommodate a wheelchair. That's 1.7%, making the chance of hailing one almost impossible. That tiny proportion clashes with the ADA's requirement of equality of access and cannot be remedied by a sketchy plan for a system of telephone-dispatched wheelchair-accessible cabs. What's more, federal standards mandate that vans must be accessible when they are employed as cabs.
Bharara got to the point, stating, "a ruling by this court now that the city is obligated to ensure that all new taxicabs are wheelchair-accessible is all the more important because it will likely have a significant impact on both the city's implementation of an accessible taxicab dispatch system and its selection of the vehicle that will become the 'Taxi of Tomorrow.'"

The TLC concept of a dispatch system will not only fail miserably (which it did under a test run last summer) it is an obvious attempt to avoid complying with the ADA. Based on the U.S. Attorney's words it seems that the mayor and TLC have no choice but to accept the fact they cannot continue to break the law. The so called taxi of tomorrow must be accessible. This losing fight on the part of the city fight reminds me of the late 1970s when Mayor Koch was violently opposed to making city buses accessible. I vividly recall Koch loudly telling reporters it would be cheaper to rent a limo for every person with a disability than putting lifts on NYC buses. Koch was not only wrong but spectacularly wrong. NYC buses are not only accessible but are used by thousands of disabled people every day. I have no doubt Mayor Bloomberg is as impressively wrong as Koch was.

Bloomberg will no doubt try and fight the U.S. Attorney. His administration has been hostile to disability rights for quite some time (see my post about hurricane shelters and lack of accessible locations to vote). I am hopeful this is a fight Bloomberg and the TLC will lose. Even with a victory change will be slow to come. Hailing a cab for a person such as myself that uses a wheelchair is an exercise in futility. I tease my friends an armed bank robber being chased by the police has a better chance of haling a cab in New York City than I do. But do not take my word for it. In a letter to the editor published by New Mobility, a yuppie magazine for people with a disability, Ellen Stohl, a visitor to the city wrote: "I just returned from a trip to New York City. Cabs do not stop for people in chairs. Outside the Empire State Building, my family and I tried to hail a cab. My husband kept flagging them down, but they would pull in and then pull right back out when they saw the chair." This is an every day event for anyone in NYC that uses a wheelchair and is naive enough to try and hail a cab. But Stohl is a smart woman. She learned the NYC way to hail a cab. She wrote "I finally had to hide behind a big flower pot while my husband and a ticket salesperson waived down a cab. We got my mother-in-law and daughter into the cab before I came out of hiding so the cabbie could not leave". And that my friends is about the only way a person that uses a wheelchair in NYC can get a cabbie to stop. It is grossly wrong and the norm. If the Mayor and TLC have their way nothing will change for decades. If they lose, I hope NYC cabbies of the future may actually change--there would at least be hope someday I can hail a cab like other New Yorkers.

Blind Stupidity: The Media Misses the Point Again

Print media many contend is dying. What will replace it is subject to debate. I for one will not miss mainstream New York newspapers or television news programs. For me, the internet has firmly replaced the need for newspapers and television news programs. Yet I still glance at the newspapers--on line of course. My guilty pleasure is the oldest local tabloid, the New York Post. I love the headlines--tawdry and wildly creative. I avoid reading any of the "news" in the NY Post. No one I know reads the Post for the news. You read the Post for gossip in fashion, politics, and sports. And since I am New York Ranger fan I read the Post because Larry Brooks is a controversial writer who covers the team. Yesterday as I was reading the sports page and on the screen I saw a picture of a very attractive woman and the headline "Blind Ambition". Despite the cute play on words I told myself do not read that article. Just don't do it. Give credit to the Post, I just could not resist. The Post is smart I am stupid. How I wish I had not read the article. It was dreadful and typical--the archetype for articles about people with a disability that miss the point by a country mile.

The main stream media loves creative titles when disability is involved. "Blind Ambition" is catchy and the picture of a very attractive woman in her 20s is hard to resist. I knew the article was going to be dreadful after reading the first sentence: "She's Wall Street's blind bombshell". Here are some of the low lights--lines that are objectionable. Let me parse these lines and reveal the underlying cultural assumption.

NY Post: "Despite being legally blind, the bullish beauty works on the equity trading floor of JP Morgan Chase".

Assumption: People who are legally blind are not expected to hold a job and certainly not a job that involves responsibility.

NY Post: "But work came with adjustments".

Assumption: Blindness is so terrible I cannot imagine how she copes and it is remarkable she is competent. She must need multiple and costly accommodations.

NY Post: "She is surrounded by three massive 24-inch computer monitors--twice the size of her colleagues screens--to track the market, has large colorful stickers affixed to her keyboard to make out letters, and uses text-to-speech software to read her emails which are fed to her through headphones".

Assumption: Wow, JP Morgan Chase is wonderful! Imagine they spent all that money on high tech equipment out of the goodness of its heart so this poor woman can work. She sure is lucky. The employer is bending over backwards for this woman.

NY Post: "It's an incredible example of fortitude to do her job the way everyone else does".

Assumption: People who are blind cannot do what sighted people can. Those blind people that can do the ordinary--work like the sighted--are remarkable people. Incompetence and lack of ability is assumed to go and in hand with blindness.

I do not think I am being too harsh. I accept this is a tabloid and my expectations are severely limited. With editing this article, even with its catchy title, had potential. The NY Post could have made people think. For example, a good article could have noted the following.

The woman in question is lucky to have been employed before she lost her sight in 2009. The unemployment rate among blind people is 70% This familiarity surely enhanced the chances she could return to work. The accommodations made by JP Morgan Chase are required by the ADA--it is the law. The large screens and software used were not costly. In fact, accommodating an employee with a disability is not costly--usually a few hundred dollars at most.

The above facts never seem to wind up in print. The focus is always on the kindness or generosity of the employer who bends over backwards for a person with a disability. This person is always "remarkable" and possesses "fortitude". The unspoken corollary is this person puts all those other incompetent lazy crippled people to shame. If most people with disability were like this person they too would have a job. This lets society and its failure to accommodate people with disabilities off the hook. Maybe the unemployment rate would not be nearly 70% if mass transportation and affordable housing were accessible. No, this is never brought up. Instead, we laud the plucky individual cripples that succeed against all odds. This makes me crazy and I am perplexed any human thinks this way. The problem people with a disability have is a long held ingrained social bias that is demonstrated in the form of a lack of access in all avenues of life. Instead of praise one sole blind person why not pose the following questions:

Why is text to speech software not included as part of every computer operating system?
Why is closed captioning not universal on line and in all video produced?
Why is every mass transportation system not accessible?
Why is not all new home construction accessible?

I can pose hundreds of other questions about the gross lack of equal access for people with disabilities in American society. I am not sure what good it would do. For reasons I have never been unable to understand, when it comes to disability American society has yet to enter into a national dialogue about its meaning, importance, and exactly why inclusion has proved elusive. Articles such as the one discussed in the NY Post are but a small sign equality for people with a disability is a long way off.

Come On, How Bad is it?

When the issue of disability rights comes up I am often asked, "Come on, how bad it it?" Some people have a hazy idea there was a law passed a long time ago that they are convinced solved all the problems of disability based discrimination. Others are simply oblivious. Disability discrimination in their estimation is a myth. The reasoning here is two fold: first, no one would or ever has discriminated against crippled people. Society looks after the less fortunate. Second, since discrimination has never taken place there is no need to protect the civil rights of people with a disability. Any connection between disability rights and civil rights is accordingly wrong and way off base. It is hard for me to fathom the way the general public thinks. But then I think of course, people are not exposed to disability until the end of life if they live long enough. Disability is not taught in secondary schools nor is it part of university curriculums. Hence, ignorance abounds.

So to return to the question, "Come on, just how bad is it?" Pretty damn bad. Horrifying in fact. A series of grim statistics have been released that indicate things are very bad. First I read a report in the American Journal of Preventative Medicine, "Sexual Victimization Against Men with Disabilities" that not only are women with disabilities at great risk of sexual abuse but so too are men. This report found that men with cognitive disabilities were four times more likely to experience abuse than men without cognitive deficits. I tend to think the risk might be even greater because the study was specifically about cognitively disabled men who were not institutionalized. The researchers glumly concluded "Men with disabilities are at a heightened risk for lifetime and current sexual violence victimization. The most notable finding is that the prevalence of lifetime sexual violence, completed rape and attempted rape against men with disabilities was comparable to that against women without disabilities".

In keeping with the sexual violence and victimization, this week the Department of Justice released a report entitled "Crimes Against Persons with Disabilities, 200802010-Statistical Tables". And yes you guessed it things are pretty bad. In 2010, 567,000 people with a disability aged 12 and older were the victims of nonfatal crimes. No statistics were included about fatal crime victims. Again, these figures do not include people with disabilities in institutions. Nonfatal cries are rape, sexual assault, robbery, aggravated assault and simple assault. Amazing this represents progress. In 2009, 753,000 people with disabilities were the victim of a nonfatal crime.

Again, I return to the question, "Come on, how bad is it?" Bad, very bad. And it gets worse. The violence experienced by Americans is minimal when compared to people with disabilities living in Third World countries. The odds of a person with a disability in a Third World country living to the age of 21 is about 20% Am I lucky to live in America? I suppose so but I certainly do not feel safe after reading the two reports discussed. I have never felt equal. I fear crowds. I am exceedingly aware of my surroundings. I secure my wallet carefully. I do not attend any event that could remotely turn violent. This excludes me from protesting, something I would very much like to do. I would not consider going to a football game here or abroad. I know in the event of a natural disaster shelters are most likely not accessible. Forget mass transportation. In the event of a plane crash my dim odds of survival are worse than every person that walked onto the plane. Need I go on? Equal I am not. In short, yes things are bad. But this does not bother me nearly as much as the fact no one seems to care. Not my neighbors, certainly not the local school board. The town government maybe? Not a chance. The only people who care are those whose life has been touched in a tangible way by disability. Some of my friends and family care. Some of my former students care. I know the people that read this blog care very much. I just wish I could reach the average person on Main Street as politicians like to invoke. Those people matter. Those people are the one that pose the question "come on, how bad is it"

Keep Quiet: A Clear Message

Certain social environments are hostile to people with a disability. There is no universal source of agreement on this. Much depends upon one's age, disability, gender, sexual orientation, social status, geographic location etc. For me, your average paralyzed, middle aged white male I do my best to avoid Catholic Churches, health food stores, and gyms to mention but three places that are hostile to inclusion. I know if I venture into anyone of these places I am going to be demeaned, insulted and treated as a second class citizen. My attitude is why bother? Cut my loses and read the Bible, order vitamins on line, and work out at home. I would also put one more social setting on the list as hostile to disabilities--and this is by no means universal--but would include university campuses. Given this, I was not surprised to read about a student at a New Jersey community college who was subjected to gross bigotry. The student in question stuttered. His teacher, an adjunct, suggested he not take up important class time and ask a question but rather submit questions in writing. The teacher also refused to call on this student in class. Much moral outrage has been expressed and the story has spread well beyond the confines of the New York City area. As usual when it comes to disability, the mainstream press has failed to grasp the larger importance of this incident. Instead news stories are stuck in the lurid details: how bad is the stutter? Adjuncts are under paid and incompetent! Is stuttering a disability? Is the teacher request for written questions a reasonable accommodation? All this misses the point--badly. What is at issue is a larger and growing animosity to students with disabilities on university campuses.

Are some American universities truly inclusive and responsive to disability rights? Yes, and I can think of many with a long history of inclusion. But the opposite is true as well. Some universities are hostile to people with disabilities. For instance, Ivy League institutions I would consider among the worst. When I graduated from Columbia in 1992 a mere two years after the ADA was passed into law I was pissed. Academic administrators purposely made my life miserable at Columbia. Access was not a priority, it was an onerous expensive burden. Cost cutting was common and elevators and wheelchair lifts rarely worked--more than once I was told service contracts for repair were too costly. Entrances that were accessible were often locked, keys mysteriously disappeared. These problems are minor when one considers the social hostility. More than once I was questioned about my place as a graduate student. Did I not feel guilty that I was preventing another qualified student from getting a degree? You see it was assumed I could never work, publish, or be employed.

Throughout the 1990s and until the mid 2000s universities became more accommodating socially and physically. Few if any professors were hired but plenty of students with disabilities were accepted. The welcome wagon came to a screeching halt when the economy tanked and a critical mass of students were suddenly not only asking but demanding reasonable accommodations be made. More than once I have had my professorial peers confess the campus "was over run with students with disabilities demanding ridiculous accommodations like extra class time". When I replied I saw no difference between a ramp and extra time on an exam I was deemed "difficult" or told "that ramps were entirely different".

What then is the larger significance of the story about the student with a stutter? Universities may be more physically accessible but the same institutions that build ramps and install elevators without complaint are far from inclusive. We people with a disability are second class citizens. Lip service is paid to our civil rights. How dare we ask for more! And I have it easy. Physical access for wheelchair users is assumed to be required and as such it is provided--of course if such access is expensive it is the first line item cut from the budget. The real animosity is reserved for students with learning disabilities and what can be called disability studies. Inclusion is much more than ramps and extra time to take a test. Over at Planet of the Blind Kuusisto remarked:

"when higher education can't manage a simple accommodation it delivers that old name tag: �second rate�. By not solving the problem the hierarchical dynamics of ableism are a defacto position.
Doing better means achieving something more than assuring the professional and dignified delivery of accommodations for people with disabilities. It requires a vigorous affirmation of the term �nothing about us, without us� and it means demanding full equality and respect for people with disabilities from all the offices of higher education. Unfortunately, as Lennard J. Davis has remarked, there�s a lingering ableism within neo-liberal circles, one that progressive faculty and administrators don�t generally recognize. I agree with Lenny Davis that the failure of higher education to incorporate disability into a broader framework of campus diversity is a good part of the problem. When an institutilon can imagine that people with disabilities are to be accommodated by special segregated offices and that's the whole of the matter, you are simply reaffirming a victorian (small v) assumption that the cripples belong in a special place--certainly they don't belong in the agora."

This is all too true. In my career I have yet to feel welcomed and my views on disability rights respected at universities where I have worked. Access it was clear was my problem. If I ever broached the subject of disability studies being included in the core curriculum the idea was met with derision. If you want to delve into this in detail, I suggest you read Lenny Davis work. His book Bending Over Backwards is outstanding as is his most recent essay in the Chronicle of Higher Education entitled "Why Is Disability Missing From Discourse on Diversity (September 25). The skeptic reading this post may be thinking come on, you are full of yourself. I think not. When my son applied to college I learned much about the business of higher education. Diversity, we parents about send in huge tuition payments, were told the campus is diverse. Big bold colorful pictures of young men and women throwing frisbees abounded. Every ethnic group was represented. Not once did I see a photograph of my people. Never did I see a paralyzed student or professor depicted in admissions brochures. In fact, more than one campus tour was entirely not accessible. It was suggested that I remain behind while my son take a tour with dozens of other students and their parents. Call me crazy but this felt and seemed a lot like segregation. Would they have suggested black people stay behind? Not a chance. The fact I had this experience on the grounds of supposedly institutions of higher education is deeply troubling. A sure sign that universities have long way to go in understanding and respecting people with a disability. A good start might be a class on disability rights.

Stephen Kuusisto: Words to Make You Think

Over the last few years I have mentioned many disability rights oriented blogs. I have my favorites of course and among the blogs that never fails to impress me is Stephen Kuusisto's Planet of the Blind. If you have not read his blog and published work--especially his memoir Planet of the Blind--stop reading these words. Go to his blog or better yet buy one of his books. Kuusisto is way smarter than I am. His writing is head and shoulders above anything I have published or posted here. He is also funnier than I am. By funny I mean it in the rarest of ways--he can make you laugh and think at the same time. Okay, my man crush is over. You get the idea--Kuusisto is funny, smart and a gifted writer. If an academic could have a fan club I would be a charter member.

Remember the above words as I want to take Kuusisto to task. He put up a post on his blog, Essay on the Politics of English Clarity and Them Folks with Disabilities, that has me puzzled. I have read the post a dozen times in the last few days and am no nearer enlightenment. One thing, however is clear, the post has me thinking long and hard. It is also a fine piece of writing. For instance his words about what he calls the post human age, the mix of technology and the body, will blur the line between what is perceived to be normal and abnormal. Kuusisto astutely uses the example of well-known amputees Aimee Mullins and Oscar Pistorius. He writes

"that while prosthesis may become no different than the brand of automobile one drives, invisible disabilities or those that produce a public misapprehension about intellectual capacity (blindness, apparent deafness) will remain problematic in the town square. While physical difference can become fashionable, disablement as a capacity of mind is more difficult for the public nerve. In Western tradition we tend to believe in the mind as a substance rather than an essence, we cherish thought that is fast and muscular but denigrate neuroatypical thinking. We believe in �mind over matter� and imagine that those with learning disabilities or who are on the autism spectrum are simply not doing enough pushups."

Yes, the public nerve is fickle when it comes to disability. To me my wheelchair is an empowering adaptive device. For the general public, a wheelchair is the ultimate symbol of disability, infirmity, and total lack of personal autonomy. My wheelchair has no cool factor, its presence, my presence, a tragedy. In contrast, Mullins and Pistorius prostheses and the technology involved is lauded and valued. Prostheses arouse the notion of science fiction cyborgs that have captured the public imagination since the Six Million Dollar Man was one of the highest rated shows on television. We can rebuild him I think was a catch phrase. But exactly what are we rebuilding? A body that is socially acceptable. Given this, little or no value is placed on wheelchair technology. Instead we get preposterous devices such as the exoskeleton.

The above is where I stopped comprehending Kuusisto. He goes on to write that the politics of language demand precision when it comes to disability. We cannot, he maintains, afford to be fooled. He then refers to Nancy Mairs who embraced the word cripple. I like the directness of the word. I have lost use of my legs. I am indeed crippled. No fooling. Like Mairs, I want to believe I swagger. I am not meek, I am strong. Part of this strength I derive from my crippled body. And here is where Kuusisto loses me,. He concluded his post:

"Mairs writes famously, �as a cripple, I swagger� a position that�s unassailable given the economic abjection in �disability�--that Victorian term still tied to the factories of the Industrial Revolution--it was Karl Marx�s noun for those who lacked the economic utility to be useful workers. Surely �disability� does not swagger. Moreover the word carries no degree or standard of completeness. This is its signature problem for if a cripple is entire, singular, and freed from oppositional enactments with ability, a person with a disability is trapped in a triangle of etceteras--unable, etc; incapable, etc; accordingly, vaguely sub-Cartesian--sans thought, etc. Disability disorganizes conduct and places physicality outside of possibility. So the term has less to do with opposition to normal activity and a good deal to do with a prejudicial conspiracy against the mind. Just as nothing in nature is truly broken, just as evolution defies the normal, there is no proper categorical or taxonomic position that can hypostatize variance or give it a name.
As I�ve said more than once I prefer �world citizen� to disability. I prefer omnimodal essences and motive power.

I have read a lot of Marx. I have read plenty of disability theory too. I know exactly which work of Mairs Kuusisto is referring to. And yet I am perplexed. First, physicality is not beyond the ability of crippled people. I ski, kayak and have fathered a son. All this take a measure of physicality. Second, we cripples have a place in society. It is not a "taxonomic position" I enjoy, in fact it one one I rail against. Namely, we cripples are far from equal and perceived to be damaged goods. Like Kuusisto I do all I can to undermine this societal assumption. Third, the preference for "world citizen". Give me a break! People look at me as though I have two heads when I use words like cripple and ableist or ableism. If I were to use "world citizen" I would be laughed at and mocked. I can hear my friends now "I think you smoked too much dope in college man. Go hang out with your Occupy Wall Street buddies".

Here is where I think I differ with Kuusisto. I live in a gritty and at times a bigoted nasty world. I struggle as a part time academic, writer, activist and jack of all trades. Will do anything for a living sort of guy. This is not sour grapes, just the way things worked for me. Kuusisto in contrast is a big time academic and works at a top flight university. He deserves everything he has worked for as he too lives in a gritty and bigoted world. But, and you knew a but had to be coming soon, he has a place to hang his hat and be respected. Most crippled people have no such place where we are respected. Hence I am stimulated by Kuusisto's work, delighted by the way he plays with words yet found his post distressing. Where is its connection to the ordinary and gritty world and average crippled person? Not all cripples know Marxist theory and Nancy Mairs work and I consider myself lucky to be able to grasp most of what Kuusisto wrote. Sadly, most cripples are too worried about their meagre benefits being cut, losing their home. accessing mass transportation, or finding work. These people, my people, are always in my thoughts.