EDS Presentation at the Western Social Science Association’s (WSSA) 45th Annual Conference

By Barbara J. Uggen-Davis

On April 10, five speakers from EDS Today gave a presentation on EDS at the Western Social Science Association’s (WSSA) 45th Annual Conference in Las Vegas, Nevada. The staff of EDS Today is proud to share some information about the conference, the speakers, and the presentation.

The Conference

The Western Social Science Association (WSSA) is an organization dedicated to fostering professional study, to advance research, and to promote the teaching of social sciences. Formerly the Rocky Mountain Social Science Association, WSSA was founded in 1958. Several affiliated organizations meet concurrently with the WSSA conference and share in the development of the conference.

The 45th Annual WSSA Conference was held April 9-12 at the Riviera Hotel in Las Vegas, Nevada. The conference was divided into twenty-nine sections, each covering a different area of social science, including ethnic groups, criminology and justice, chronic disease and disability, political science and more.

WSSA issued a call for papers and presentations in preparation for this conference. EDS Today columnist, Laura Hague, PhD learned of WSSA’s conference and suggested that EDS Today develop a panel discussion group to present at the conference. She wrote the proposal and submitted it to WSSA and I contacted potential speakers.

The Speakers

The panel included a moderator and four speakers. As the instigator of the project, Laura Hague served as moderator and coordinator for the presentation. The speakers were Patricia Howey, Bonnie Heintskill, Barbara Uggen-Davis, and Christine Phillips.

Laura Hague, Ph.D.

Laura Hague is a history instructor at Austin Community College. She has a Ph.D. in history from the University of Texas and is currently doing research on changes in the perception of disability at the end of the 19th century.

Laura has EDS and is the parent of a grown daughter with EDS, Sarah Meador. She is the list owner/moderator for the email support group EDSers on Yahoogroups. Her involvement with EDS Today began with her column, “Laura’s Library” and is now a member of EDS Today’s Board of Directors.

Patricia Howey, Special Education Consultant

Patricia Howey is a special education consultant in Lafayette, Indiana. She is a frequent lecturer on special education issues. Pat has a series of four workshops for parents and educators. Details about her workshops and speaking engagements may be viewed on her web-site at www.pathowey.com.

Pat has four adult children, and six grandchildren, some of whom have EDS. Her involvement with special education began when her daughter with EDS needed accommodation in school.

Because of her unique experience with EDS and special education, Pat has offered to advise other parents of children with EDS. If you have questions about special education for your child, please send them to info@edstoday.org and they will be forwarded to her. She cannot provide specific information in all states, but she can give general information about special education law, your child’s rights, and may be able to give referrals to attorneys in your state.

Bonnie Heintskill, CCC/SLP

Bonnie Heintskill is a Speech-Language Pathologist from Thiensville, Wisconsin. She recently joined the EDS Today Board of Directors. She is passionate about research, education, awareness, and advocacy.

She is currently working with two other speech and language pathologists in Wisconsin to research Speech and Language issues in EDS. The study is “EDS and Speech, Language, Hearing, Voice, and Swallowing Survey.” The survey will be posted online at the Canadian Ehlers-Danlos Association website www.ehlersdanlos.ca.  Paper copies of the study are available by contacting Bonnie Heintskill, MS, CCC/SLP, principal investigator, by email: bonnieh4455@sbcglobal.net or regular mail through at: 307 N Bel Aire Drive, Thiensville, WI 53092-1429. Home phone number: 262-242-1642

Bonnie and her daughter, Amanda, both have EDS. Amanda, joined us in Las Vegas after the conference to attend the Celine Dion concert. She’s a very bright 9th grader and is likely to be joining the EDS Today team someday.

Barbara Uggen-Davis

Most of you know me through my involvement within the EDS community as both Editor of EDS Today and through my participation in twenty online support groups. I am also an active volunteer in other areas as well. I currently serve as Secretary for DAHRT (Disabled Americans Have Rights Too), a Seattle-based disability advocacy group. I am also the newest member of the Board of Directors of the Refugee Women’s Alliance (ReWA). ReWA provides many services to the refugee and immigrant population in Seattle.

When I am not volunteering, I work full-time for a company that makes neoprene and elastic braces. It’s a perfect job for someone with EDS. I hold a BA in Business Administration from the University of Washington. And in my spare time, my husband, Kerry, and I have our own freelance web design service. Kerry also has EDS and is Pat Howey’s third child.

Christine Phillips

Christine is the power and spirit behind EDS Today. It was her vision and passion for helping people with EDS that created EDS Today. She is EDS Today’s founder, publisher, and primary contributor.

Chris is married to Doug Phillips. Doug is currently undergoing treatment for cancer. Both Chris and Doug have always put the needs of others with EDS before their own. In fact, Doug was scheduled for surgery only three days after Chris returned from the conference. He didn’t want his surgery to interfere with her speaking at the conference because he too is passionate about promoting awareness of EDS.

The Presentation

The EDS presentation “Invisibility and Disability: Living with Ehlers-Danlos Syndrome” took place at 2:45 pm on Thursday, April 10. It was placed in the section on “Chronic Disease and Disability and RC-49 Research Committee on Mental Health and Illness of the International Sociological Association.” There were seven presentations within this section over two days, each lasting 90 minutes. The presentations were given in an informal, intimate setting, allowing for easy communication and discussion between the presenters and the audience.

Laura Hague began the discussion with an historical overview of disabilities, and in particular, invisible disabilities. She presented the case of a slave who was accused of malingering, (faking illness to avoid duty), because he frequently dislocated his shoulder. She compared this to the plight of people with EDS whose disabilities are not understood or believed by their friends, family, or co-workers.

The first speaker, was Patricia Howey. Pat’s presentation, “She Looks Okay to Me” outlined the numerous laws pertaining to special education and the problems parents may face in dealing with the school system.

The title of the presentation came from a comment made to Pat about her daughter with regard to why accommodations were not granted. On the wall behind the speakers were several pictures of children. The audience was asked to identify based on their appearance, which children had a disability and which did not. All of the children shown had invisible disabilities, many with EDS, and some with multiple disabilities.

Next, Bonnie Heintskill spoke of her struggles with the school system when requesting accommodations for her daughter, Amanda. She gave a brief history of the problems and triumphs they had with the school. Then she shared a specific incident involving her daughter’s run-in with a school bully that resulted in a serious injury to Amanda’s wrist.
Bonnie had been concerned about the potential for injury at school in the crowded hallways because Amanda had to use a rolling backpack to transport her books between classes. Amanda was injured in the hallway by a classmate who deliberately kicked her backpack twice, rolling her backpack onto its side and causing injury to her wrist, elbow, and shoulder. The school is denying liability for the injury and failed to notify the student’s parents about the incident. Bonnie has hired an attorney to handle Amanda’s case, which is still ongoing.

Moving from school to adult life, I presented a brief overview of the role of support groups for people with Ehlers-Danlos Syndrome. In my discussion, “Invisible Disabilities: Bringing Them All Together,” I explained that people with invisible disabilities have a greater need for support groups because there is so little acceptance and support from the general public, friends, and family for people whose disabilities are invisible.

Finally, in closing, Christine Phillips talked more on support groups and advocacy. She shared a personal story of her involvement with a young woman, recently diagnosed with EDS, and her husband. The story of this young couple may be read in Christine’s column Coping Strategies.

Audience members were allowed to ask questions after the presentation. Further discussion on all of the topics followed.

EDS Today was pleased to be selected to present at the WSSA Annual Conference and we hope to be able to do similar presentations in the future.