Thursday, April 24, 2008

Taking Stock

Someone I love very much, and whom I have known all my life, used the word "moron" while we were talking on the phone this week. My heart broke into pieces. I started to cry and tried to get off the phone as quickly as possible.

This is someone who loves me, knows my heart, and my life. Yet, the word rolled off her tongue as if it were any other word, completely unconscious of its bigotry, its history of hate, that it caused the inhumane institutionalization of people who were so labeled, and does today.

As I wrote the previous paragraph, I had to admit that is not altogether true. She is not unconscious about the issues... because she knows me. We have talked about these things... in depth.

She has family members with a variety of disabilities: autism, deafness, cognitive delays, cardio-vascular disease, low-vision, mental illness, Alzheimer's and more. But she has been unable to make the jump between my disability, family members' disabilities, and all those "other people" with disabilities.

I wanted to say something. I wanted to shout, "Why in the world would you use such a hateful word when you know that I long for equality for all people with disabilities!" Or maybe quietly say, "You know, the word you just used is just plain hurtful, and I don't ever want you to use it again, whether I'm around or not; OK?"

Wheelchair Dancer wrote this happening to her recently. Even though I understood why she did not confront her loved-ones; I was certain in a similar circumstance, I would.

I did not.

I did not think I was being arrogant when I thought that; however, upon reflection, perhaps I was. I have been speaking out about the relationship between language and liberty for over 30 years. I have done it in small groups and stadiums, bars and meeting rooms. I am not afraid of a fight. Yet, I did nothing.

This has always been a worry of mine, as a leftist. I continually fear that my actions will betray my rhetoric (even if it is unspoken). I would have no trouble saying something to a stranger, acquaintance, or co-worker.

Yet when my loved-one uttered that awful word I felt such a mix of emotions... bewildered, hurt, rage, sadness, and disappointment; and I was unable to act. I am disappointed in myself.

Sunday, April 13, 2008

Reading Wonders

I had just concluded my presentation; I was the third in a series of five speakers. The room was set up in the traditional “U” shape, with people sitting around the perimeter of the room and very little space between the chairs and the walls. Unless people were at the endpoints of the “U”, they sat trapped.

I spoke to 50 employment professionals about how low-cost adaptive devices can have a big impact on a person with a disability’s life. I passed around examples to try out and show them how simple some of the devices can be.Pictures an open binder. A person is flipping through the pages showing the different colored transparent dividers in it.

One device is a binder filled with ten different colored transparent sheets between pages of text on white paper. When placed over a printed page, the overlay changes the text’s background color. Changing the background color can significantly improve reading comprehension for some people.

I am not a scientist, so I do not really understand how it works. However, I know is that some people’s brains are not wired to easily read black text on a white paper. Finding the right background color makes it easier to comprehend what he/she read.

As the next speaker started his presentation, I began rounding up evaluations and equipment. I was trying to exit the room as quietly as possible.

A participant got up and began squeezing past 5-6 chairs; inching past each person, she would say, “Excuse me,” or “ Uh…sorry,” or “Can you scoot in a bit?” My initial thought was, she must really have to pee to cause such a commotion.

When she got to me, I noticed she was crying; she took me by the shoulders and pulled me to her. She whispered the following into my ear:

I didn’t go back to school until I was 43 years old... mostly because I was a bad reader. I thought I was dumb in high school. As I got older, I knew I wasn’t, but reading was so hard for me…


When I started taking college classes, I had to read my texts six or seven times to understand what others only had to read once. It was excruciatingly slow and difficult. I had to carry a lighter class load, because it took me so long to read. No one helped me. But, I finally got my Master’s degree.


When I flipped the pages of that binder… and got to the aqua colored overlay…. I felt my brain r-e-l-a-x. My eyes felt less strain too. It was amazing!


Why don’t people know about this?

She endured hardship after hardship as a college student, taking her longer to complete her degree and delaying getting a good paying job because of her barriers to reading. She could have benefited from a number of technologies to support her studies, one being an aqua colored transparent sheet, available at any office or school supply store, to lay over her textbook.

Why Don’t People Know About These Things?

It was/is a very good question. I get a similar reaction (though not often as dramatic) every time I pass the binder around a training room. Everyone is surprised that something so simple could have such a dramatic impact.

Part of the answer lies with the way professionals deliver services. For example, a special reading teacher’s goal is to make students readers; ”curing” them of their reading disability.

Finding assistive technology, even the simplest device, means removing barriers to a task; not fixing “deficits.” Assistive technology changes the setting so it fits the person. Improving someone’s ability to function is the goal, not curing them. It is about access.

Part of the answer also lies in a person’s inability to identify him/herself as someone with a disability. The social stigma that accompanies a disability is a difficult for someone to overcome.

Despite our own disability pride in our bodies and our selves, society does not yet to understand that disability is overwhelmingly a social construct. Rather than identifying with part of a discriminated class, a person with a hidden or unrecognized disability internalizes their struggle and tries to “pass” or hide. If they can pass, they believe life will be easier. Unfortunately, the opposite is true. Hiding limits possibilities and opportunities.

Another part of the answer is that despite the fact technology has revolutionized the way we perform every single task in our lives, from driving to picking paint colors, the application of the revolution into people with disabilities lives falls so short of the mark, it is criminal.

Educators and rehabilitation professionals have not revolutionized the way they teach or deliver services that keep up with the technology revolution.

In most colleges, a person can get a Master’s degree in Speech and Language Therapy, and never touch one of the 250 + devices that aid communication; education focuses is on fixing the speech disability. What happens to a person who will never develop speech skills? Well, everyone assumes he/she has nothing to say.

Teachers can get an advanced degree in special education and never learn about integrating educational or assistive technology into a child’s curriculum. So, when a child becomes frustrated because the material is not accessible, he/she gets a “behavior disorder” label.

Reading specialists rarely use technology. Literacy programs consider it a failure if a person does not learn to read. I have never heard of a literacy teacher saying to a student, “… there are lots of ways to get information other than reading... You’re plenty smart, you just have a disability to print. You have a right to materials in ways that make sense to you.”

I talk to parents almost daily in my work with a state assistive technology program. The stories are all frustratingly similar. They have a child failing all subjects; he/she reading level is years behind their peers. They receive no support other than a resource room teacher that helps them read words, asks the child questions about the materials, and then they send homework home, where parents and the child spend the evening in frustration and tears. As the child falls further behind, he/she gets labeled as lazy, unmotivated or a bad kid.

That little binder of colored overlays hits very close to my own home. When one of my daughters graduated from high school, she read at a 7.5 grade reading level. A 6th grade reading level is functionally illiterate. Despite that, she wanted to go away to college like her peers and sisters.

With a little research and luck we found a community college that focused on student supports and assistive technology services for students with disabilities. In one semester, with a purple overlay, they raised her reading level from grade level 7.5 to 11.5. She still uses it; and it has dramatically changed her life.

What was once painful is now pleasurable. It increased her ability to study and improved her quality of life. In short, she became a reader. What is most remarkable about her story, for me her mama, is she has read enough to know she has a favorite author.

Whether it is a colored overlay, or a book on tape or other technology adaptation, it is my hope and desire for all people who struggle with reading to get to know their favorite author too.

Friday, April 4, 2008

Acupuncture Board: Blind Need Not Apply

Acupuncture is an 8000 year old medical treatment. The first record of an acupuncturist who was blind occurred during the Edo Period (about 1600), though blind individuals likely practiced before that.

Acupuncturists who are blind make up about 30% of all licensed acupuncturists in Japan. They work alongside their sighted peers in private practice and at clinics and hospitals throughout the country. There are even schools that specialize in teaching blind students the skill. They hold the same licenses, earn the same wages, and charge the same fees as any sighted acupuncturist.Photo of Juliana Cumbo.

But none of that has helped Juliana Cumbo, who has a master's degree from Academy of Oriental Medicine in Austin Texas; she also served her internship there. In addition, she passed the Texas State Board Exams. She has been blind since she was ten years old.

Will Morris, President of the Academy said, "Juliana is an exemplary practitioner ... and she is extremely talented... I am proud to sign her diploma."

An article in Austin's American-Statesman by Mary Ann Roser explains:

As a student, Cumbo completed 3,218 hours of training, about a third of which was clinical experience in which she worked on 592 patients without any formal safety complaints, said Xiaotian Shen, the clinic's director and one of Cumbo's teachers.


Shen said he was initially concerned about whether Cumbo could practice safely.

Instructors gave her more hands-on training, Shen said, including guiding her hands to the proper points on patients' bodies. Cumbo's fellow students made strings with knots and placed them on models to mark the spots, he said.


Cumbo is now better at finding acupuncture points than many students who can see, Morris said.

But, being exemplary and passing the state licensing exam wasn't good enough for the Texas State Board of Acupuncture Examiners.* They denied her license in October 2007. Meng-sheng Lin, chairwoman of the licensing committee told Cumbo, "I'm really concerned about you ... both you and the public."

Oh God, Save Us from Patronizing Bureaucrats

There is nothing in the state law that prevents the board from licensing a person who is blind. However some of the state board members said they have "concerns" about letting a blind person "putting needles" in a patient.

Of all the condescending clap-trap this one has to rank right up there with the worst. Blah! Apparently if you are a person with a disability, not even 400 years of success is enough to sway a bigot about our ability to do a job well.

When Juliana Cumbo heard the board's decision she started to cry. She appealed the decision. In February, 2008 Texas state officials voted to have two neutral observers evaluate Cumbo's skills to determine whether she would become the first blind person licensed in Texas as an acupuncturist.

This is not a requirement for any other prospective candidate. Members of the school spoke in favor of her application. However, one acupuncture patient said she could not imagine having someone blind treat her. Well, by all means, that ought to carry more weight than the opinion of her teachers and peers.

One member of the licensing board said blind people aren't allowed to fly planes or drive — nor should they be allowed to stick needles in people. The school should not have enrolled Cumbo in the first place, "I feel my acupuncture board is the victim." (Emphasis added.)

I guess the election boards in 1950s Mississippi spoke with the same impunity and audacity about people of color voting. Their election boards were being victimized by would-be black voters.

Cumbo's lawyer, David Cohen of Austin, is quoted that the decision "does appear to be an extra burden placed on her" that other licensees don't face. He has said the board's denial of a license on the basis of blindness alone could violate the Americans with Disabilities Act and be potential grounds for a lawsuit. Duh... ya think?

Cumbo has a job offer waiting for her once she becomes licensed.

__________________

Dear Juliana,

Unfortunately, the board of examiners do not care if you did your best. All they care about is holding on to their preconceived notions of what you, as a person with a disability, can and cannot do.

Facing discrimination and bigotry is an overwhelming and degrading experience. I am sorry that happened. But do not waste your tears on the ignorance of others. Don't cry; fight it!

I know you did not set out to be a disability rights activist. You were just going about your life, working on your life goals... and then you hit this bump. Once you get your license, I hope you can fade back into any life you choose. But for now, the disability rights movement is pulling for you and your rights.

You are not alone. Tell us, your brothers and sisters in the disability community what we can do to change this injustice that was thrust upon you. We can raise our voice with you and work together to change this injustice.

And when you get your license... I'm coming to Austin. "Cause, ya see, Doc... I have these pains in my legs..."

In struggle together,
Cilla Sluga
AKA Big Noise

____________

Members of the Texas State Board of Acupuncture Examiners are:

  • Sheng Ting (Sam) Chen, (Public Member) of Austin
  • Chung-Hwei Chernly, L.Ac. (Acupuncturist) of Hurst
  • Donald Ray Counts, M.D. (Physician Member) of Austin
  • Pedro (Pete) of V. Garcia, Jr. (Public Member) of Frisco
  • Raymond J. Graham (Public Member) of El Paso
  • Hoang Xiong Ho, L.Ac. (Acupuncturist) of San Antonio
  • Terry Glenn Rascoe, M.D. (Physician and Presiding Officer) of Temple
  • Executive Director - Donald W. Patrick, M.D., J.D.
  • Presiding Officer - Terry Glenn Rascoe, M.D.
  • Secretary – Treasurer - Pedro (Pete) V. Garcia, Jr.