All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? I have no idea. My soul is from elsewhere, I'm sure of that. And I intend to end up there...Who looks out with my eyes? What is the soul? I cannot stop asking. If I could taste one sip of an answer, I could break out of this prison...I didn't come here of my own accord, and I can't leave that way. Whoever brought me here will have to take me home.

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18 June 2010

Autistic Pride Day, 18 June 2010

Some supporters of Autistic Self Advocacy Network - Portland (ASAN - PDX) met at the Oregon Museum of Science and Industry, OMSI, for Autistic Pride Day. We wore our "posautive" tees.

Click here to see last year's APD post.

16 June 2010

The Uncharted Path: My Journey with Late-Diagnosed Autism, by Rachel B. Cohen-Rottenberg

In case you don't know this about me, I am an aspiring author (Young Adult paranormal fiction, short stories, and nonfiction) and so it pleases me greatly to compose this post--yay! What a treat!

Congratulations to my friend Rachel Cohen-Rottenberg on her memoir about life, love, struggle, and joy through the eyes of a woman awakening to her place on the autism spectrum!

It was an honor to review this novel (check out the back cover!) Here's what I had to say:

"The Uncharted Path is a journey that moves from lonely beginnings to a meaningful kinship found within the Autistic community. This book is an excellent example of how capable autistic people are at self-growth and acceptance. Readers will gain insight into the determination it takes to move from a three-year-old child's budding realization of the vast chasm of separation between the autistic self and the world to the adult realization of: It's me. It's just me. Rachel puts it well by stating that the key to developing a new sense of belonging is to cultivate a new sense of self-acceptance. A place on my bookshelf has been earned by this memoir, as it is right up there with my personal favorites authored by individuals on the spectrum."

There were many times in reading Rachel's book that she struck a chord of recognition in my own life story. I especially liked how she described what it is like to always be functioning at emergency level (pre-diagnosis). When I look back, it's truly amazing that autistic people like us have survived. Emergency level is definitely not a daily state I ever want to enter again. It takes a strong sense of realization--in addition to an astute competent diagnostician--to move beyond wondering why you are different to knowing and accepting why you are different.

Rachel carries her point forward by writing clear and succinct. I will never forget this sentence: After a half-century of feeling invisible, unworthy, and utterly strange, I wanted someone else to see me, to hear me, to understand me, to take me seriously, and to not send me away until I got a label that made sense.

This book also provides valuable insight into the things us autistic parents can do. I laughed aloud when Rachel shared her husband's response when, like all mothers, Rachel questions her adeptness: “Oh, for goodness sake. Look at your child. How is she doing? Good self-esteem? Basically happy? Friends she enjoys? Yes? Can we start dinner?”

This title will be available as of July 2010. To purchase a copy, click here (be advised that you will need to wait until July, which is just around the corner).

Be sure to check out Rachel's blog, Journeys with Autism.

(Love your book cover, Rachel! And I love you too!)

Related post:

Autistic Aspirations: Do We Have the Same Chances?

10 June 2010

Cross-Disability Letter on Disability Health Disparities

June 9, 2010


Kathleen Sebelius
Health and Human Services

Mary Wakefield
Health Resources and Services Administration

Pam Hyde, JD
Substance Abuse and Mental Health Administration

We the undersigned disability advocacy groups urge you to include representation of the cross-disability community on the Negotiated Rulemaking Committee (NR) that will establish a comprehensive methodology and criteria for designation of "Medically Underserved Populations" (MUPS) and Primary Care Health Professions Shortage Areas. As a cross-disability community, we are stakeholders in the task you will undertake. However, we do not fit within the geographic census track data that has been used in the past to designate medically underserved populations. More than 54 million Americans with disabilities, including individuals with physical, mental health, sensory, environmental, cognitive, intellectual, and developmental disabilities experience inadequate health care because of a lack of primary care providers trained to treat them. In 2000, Healthy People 2010, cautioned that "as a potentially underserved group, people with disabilities would be expected to experience disadvantages in health and well-being compared with the general population." They have and the data is startling.

Basic primary care is not a guarantee for anyone in the disability community. (Drainoni M, Lee-Hood E, Tobias C, et al., 2006) Three out of five people with serious mental illness die 25 years earlier than other individuals, from preventable, co-occurring chronic diseases, such as asthma, diabetes, cancer, heart disease and cardiopulmonary conditions. (Colton & Manderscheid, 2006; Manderscheid, Druss, & Freeman, 2007) Inaccessible medical equipment and lack of trained physicians, dentists, and other health professionals prevent individuals with disabilities from receiving the basic primary and preventive care others take for granted, such as getting weighed, preventative dental care, pelvic exams, x-rays, physical examinations, colonoscopies, and vision screenings. (Kirschner, Breslin, & Iezzoni, 2007; Chan, Doctor, MacLehose, et al. (1999); Manderscheid R., Druss B., & Freeman E . 2007).

People who are deaf or experience significant problems hearing report they were three times as likely to report fair or poor health compared with those without hearing impairments. (NCD, 2009). They have difficulty communicating with primary care providers who don't want to pay interpreters or "bother" with a Telecommunication Device for the Deaf (TDD). Children with ADD may have difficulty getting examined by primary care providers untrained to treat them. People with significant vision loss are more likely to have heart disease and hypertension, experience a greater prevalence of obesity, and smoke more than the general population. (NCD, 2009). Further, people who are blind often miss out on the prevention handouts and booklets given to patients by primary care providers. Even providers report they have difficulty communicating with patients who are deaf or have severe visual impairments. (Bachman S., Vedrani, M., Drainoni, M., Tobias, C., & Maisels L., 2006)

27% of adults with major physical and sensory impairments are obese, compared with 19% among those without major impairments (Iezzoni, 2009). Research shows that individuals with intellectual disabilities must contact 50 physicians before they can find one trained to treat them. (Corbin, Holder, & Engstrom, 2005)

According to the National Council on Disability (NCD), 2009 report, The Current State of Health Care for People with Disabilities, "eople with disabilities experience significant health disparities and barriers to health care, as compared with people who do not have disabilities." Further, "[t]he absence of professional training on disability competency issues for health care practitioners is one of the most significant barriers preventing people with disabilities from receiving appropriate and effective health care."

Members of the disability community experience a broad spectrum of functional limitations that result from their disabilities. Many experience secondary chronic conditions. As the recent draft "A Strategic Framework 2010-2015 – Optimum Health & Quality of Life for Individuals with Multiple Chronic Conditions " by the HHS Working Group on Multiple Chronic Conditions" (May, 2010) reported, functional limitations can often complicate access to health care and interfere with self-management. The Institute of Medicine noted there is evidence that patients actively receiving care for one chronic condition may not receive care for other unrelated conditions.

The 1997 IOM report Enabling America bluntly stated that federal research effort in the area of disability was inadequate. On July 26, 2005, the U.S. Surgeon General issued a Call to Action warning that people with disabilities can lack equal access to health care. Though some funds are available for developmental and intellectual disabilities through the CDC, Maternal and Child Health, and the Developmental Disabilities Act, the 2007 IOM report, The Future of Disability in America states that research spending on disability is miniscule in relation to current and future needs. In this Report the IOM also warns that the number of people with disabilities is likely to rise, fueled by aging baby boomers.

We need to assure adequate numbers of primary care providers are trained to treat the population of people with disabilities; people with disabilities from across the disability community have access to adequate primary care; and funding is available for research and programs to end the health disparities people with disabilities face. With the passage of health care reform and the formation of the NR Committee to redefine "medically underserved populations," HRSA can finally work to rectify the problem for all people with disabilities. Collectively, we are an underserved population and we are not adequately represented on the proposed NR Committee. We urge you to appoint someone to represent the cross-disability community, recognize people with disabilities as a constituency stakeholder within the definition of medically underserved populations, and include subject matter experts who represent the health care needs of the cross-disability community. Our groups are glad to serve as resources for HRSA. Thank you. (References below signatures.)


Access Living
ADAPT Montana
Alpha-1 Association
Alpha-1 Foundation
American Association of People With Disabilities
American Association on Health and Disability
Amputee Coalition of America
American Medical Rehabilitation Providers Association
American Network of Community Options and Resources
American Speech-Language-Hearing Association
The Arc of the United States
Association of Maternal & Child Health Programs
Autistic Self-Advocacy Network
Bazelon Center for Mental Health Law
Brain Injury Association of America
Bronx Independent Living Services
California Foundation Independent Living Centers
Center for Disability Rights (Rochester)
Center for Independence of the Disabled, NY.
Center for Self-Determination
Center for Women's Health Research at UNC
CHADD – Children and Adults with Attention-Deficit/Hyperactivity Disorder
COPD Foundation
Council for Exceptional Children
Disability Health Coalition
The Disability Network
Easter Seals
The Epilepsy Foundation
First Signs
Hearing Loss Association of America
Life Skills Institute and Life Skills, Inc
Little People of America
Mental Health America
National Association of County Behavioral Health and Developmental Disability Directors
National Association of Head Injury Administrators
National Association of Councils on Developmental Disabilities
Khmer Health Advocates, Inc.
National Coalition for Mental Health Recovery
National Council on Independent Living (NCIL)
National Down Syndrome Society
National Organization of Nurses with Disabilities
National Association of Private Special Education Centers
National Association of the Deaf
National Center for Environmental Health Strategies, Inc.
National Multiple Sclerosis Society
National Spinal Cord Injury Association
New York Association of Psychiatric Rehabilitation Services
Not Dead Yet
Physician-Parent Caregivers
Regional Center for Independent Living (Rochester, NY)
Rochester ADAPT
Spina Bifida Association
Statewide Independent Living Council of GA, Inc.
Stop CMV - The CMV Action Network
Substance Abuse Resources and Disabilities Issues Program (SARDI), Boonshoft School of Medicine
Tourette Syndrome Association
Tuberous Sclerosis Alliance
Master of Public Health Program, Tufts University School of Medicine
United Cerebral Palsy
United Spinal Association
Center on Independent Living, University of Kansas

01 June 2010

World Autism Interviews: Me

Two grad students from Ohio State University (who are Aspitude fans--yay!) asked if they could interview me for their literacy narrative project. I'm always up for an easy blog post, so I've decided to share my answers. 

Students: What does "disability" mean to you?

Elesia: The Americans with Disabilities Act has a basic definition of disability: an impairment that substantially limits one or more major life activities, a record of such an impairment, or being regarded as having such an impairment.

There are medical and social models of disability, which may be generalized as one being cure-focused and the other being inclusion-focused.

A lot can be said about the term disability. It is a word that conducts current.

Some people view disability as a negative while others view it as a positive. Disability has been defined many ways: as a way of life, as a burden, or as a gift. In my book, disability has the power to unite communities seeking equality, inclusion, and respect.

There is the neurodiversity movement, which promotes social acceptance of neurological difference as a part of the broad panorama of human diversity. It seeks to bring about a world in which people with disabilities can enjoy the same access, opportunities, and rights as all other citizens. Acceptance of variety is essential to benefiting from and understanding the contributions of everyone in our society.
In a nutshell, disability defines a particular minority group that I'm a part of. Disability is me.

When I think about disability, activist Norman Kunc's words run through my mind. As a keynote speaker at a conference, he said no matter how far technology advances, disability will always be here because it is a normal part of human diversity. Way to go Norman!

Students: What does disability studies mean to you? How would you define it, in your own words?

Elesia: I think of it as an interdisciplinary field that explores disability through numerous mediums. Disability studies should be introduced in preschool and it should continue throughout formal schooling years and beyond.

Students: How do you think your life has been affected by disability studies? Is it more negative or positive, if at all?

Elesia: There is a greater awareness about disability in comparison to when I was born, but I still run into insensitive people.

Students: What does literacy mean to you? How would you define what being "literate" means? Illiterate?

Elesia: The term literacy may be looked up in a dictionary. Assuming you're wanting a bit more than that, I shall move on to the importance of Augmentative and Alternative Communication (AAC), which consists of strategies that assist people with specific communication challenges
to participate more fully in any aspect of life (e.g. education, employment, community activities, care management, volunteerism). The general goal of AAC is to achieve the most effective communication possible for the individual.

To reach maximum literacy potential, a key factor involves the medium through which literacy is obtained. Barriers must be either accommodated or removed.

As for people with disabilities, illiteracy is often an unforgivable result of compromised access to ideal communication.

Students: How has your disability related to your definition of literacy?

Elesia: Empowerment and self-advocacy (especially in regards to gaining access to ideal communication) are important steps toward removing barriers to literacy.

As for my life experience, literacy comes and goes. Sometimes I am very coherent and able to understand whatever is thrown at me. Sometimes I am not. My ability to understand is like a light switch that gets turned on and off. This is a profound realization I have come to in regards to myself, and it is as fascinating as it is frustrating. If a work obligation comes to me when I am in one of my fogs, I will not understand, and that leads me to procrastinate. But when the fog lifts, all is clear and I feel invincible.

Students: What role does blogging play in your life? How does it relate to your disability?

Elesia: I enjoy blogging, as it is a way for me to air my ideas and opinions and receive feedback. Being both Autistic and Deaf, I may have unique experiences or perspectives others may wish to learn or read about. We spoke of disability studies above: my blog is a small speck of color that helps to make up the great collage of disability.

Students: Do you feel like blogging has enabled you to better express your feelings about disability? Inform others?

Elesia: Yes. The best part about blogging is that I can organize my disjointed garbled thoughts in one sitting. In a back and forth conversation, doing so would take me much longer. I enjoy reading a multitude of blogs within the disability community, as I learn so much and come away with new ways to explore how society relates to us. I want to know what people with disabilities think is important for others to know. We blog about things that hit us deeply. For readers, it's a voyeuristic look into our personal worlds.

Students: What do you think blogging has done for disability studies, the disability community?

Elesia: Given a forum, people with disabilities may express, firsthand, what's really on our minds. This reminds me of Community Based Participatory Research, which is an interdisciplinary research methodology in which scientific professionals and members of a specific community work together as equal partners in the development, implementation, and dissemination of research that is relevant to the community.

Recommended books on disability/disability rights:

Claiming Disability: Knowledge and Identity, by Simi Linton

Disability Theory, by Tobin Siebers

No Pity: People with Disabilities Forging a New Civil Rights Movement, by Joseph P. Shapiro

Nothing About Us Without Us: Disability Oppression and Empowerment, by James I. Charlton