ADA for All, Including Disabled Parents of Non-Disabled Children

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Unless one studies and interprets the legalese of our laws, it can be quite overwhelming when trying to understand our rights under the Americans with Disabilities Act as individuals with disabilities. While I had been capitalizing on services for students with disabilities during my college years, I recently came across a confusing scenario that snowballed into several departments, agencies, and advocacy groups coming together to ensure my rights be respected and, most importantly, enforced.

Steven sitting at a desk with a laptop using CART

Steven using CART services

Experiencing Exclusion As a Parent

As a single parent involved with my children's education, I would too often be forced to endure situations that would exclude me. After raising two boys and putting them through school without assistive technology, it was apparent in hindsight I could have benefited had I known about assistive technology as well as CART services (Communication Access Real-time Translation, verbatim text of spoken presentations provided for live events).

Now that I use assistive technology exclusively, I would ask my daughter's teachers to send all papers to me in electronic format. This meant, according to some teachers, more work by having to scan the papers they were sending home with all their students in-class, yet I never understood their chagrin. I wondered and asked out loud, hadn’t they typed and printed these documents from an electronic source to begin with? Instead of printing one less sheet of paper, couldn’t they just merely e-mail me the document? For the most part, I would get complying responses; however, it generally turned into a fiasco with the teachers being overwhelmed with limits to their own time allowed for this "extra work."

Hearing Loss Dismissed or Ignored

More concerning were the teachers and administrators who would dismiss my hearing loss. It is quite easy to quickly identify me as being blind or visually impaired with my dark sunglasses and my white cane, yet, at a glance, there are no real obvious indications pointing towards the severity of my hearing loss. Because of erroneous assumptions that all people who are blind or visually impaired have phenomenal hearing, I found myself facing extreme difficulties understanding everybody while I received zero empathy and understanding from the school’s staff. In trying to be an active and concerned parent, I have faced more hurdles due to their lack of understanding and accommodation for a person with dual sensory loss.

Steven Wilson kneeling next to his daughter Daevi who is in a light blue dress after a school play

Towards the end of my daughter’s kindergarten year, when her school had a performance for all of the parents, friends, and family, I realized how much I had been excluded. The principal at the time had made his public announcement that he was no longer going to be with us; however, I didn’t understand any of this. It wasn’t until the following year while enrolling my daughter into first grade and meeting the new principal that I realized what it was the previous principal had said.

Troubled by this communication gap and worried about what else I may be missing, I asked a stenographer I’d been working with through college classes about CART for parents of children attending school. The quick and easy answer was, yes, parents can utilize CART, especially since the school is a public institution receiving federal funding. This seemed clear; however, much to my chagrin, when I approached the new principal about my needs to be an active participant in my child’s education, he was not at all supportive.

ADA More Than Ramps: It Includes Rights of Parents with Disabilities as Well

Here I am, the lowly parent, as I was made to feel, now facing the mighty educational institution, trying to educate the staff and administration about my rights and that the ADA isn’t in place just for ramps and doors but, more importantly to me, for communication needs. I would have thought that school educators would be on top of this issue as are the staff and instructors of the colleges I’ve been attending. It then dawned on me that these educators were applying the law only to their students, not to parents!

Getting Help from Advocacy Agency

After reporting back to my friend on the difficulties and pushback I’d been receiving, the friend went on to put me in contact with a state advocacy agency, the Arizona Commission for the Deaf and Hard of Hearing (ACDHH). A leading specialist and advocate of this organization then provided me with links to better understand disability law and help me with advocating for myself. The agency also went to bat for me with the Assistant District Superintendent.

This staff member from the ACDHH visited the Assistant District Superintendent and suggested that the next step after everything we’ve pursued would be court litigation. After that, changes occurred rapidly in my favor. Suddenly, I was being contacted by departments I’d never known existed within the school district wishing to collaborate with me on the dates and times I would need CART services. I needed this service to better understand and communicate with the teachers, administrators, and to participate in my daughter’s school performances as well as enhanced inclusion for parent/teacher conferences. Surprisingly enough, I was also flooded with e-mails apologizing for previous reactions and assurances that I would be accommodated in the future.

Without the help of the local community, state advocacy groups, and very knowledgeable people concerning the rights and laws pertaining to the ADA, I would have been very easily steamrolled right over, neglected, and ignored.

A close up of Steven Wilson and his daughter Daevi

Learn from My Experience: Find Allies

My main take away from this experience is, not only do we find some institutions unfamiliar with all that the ADA provides, but we do have allies out there to assist those of us in need. My advice to those struggling with agencies or institutions who feel they are getting the run around is to seek out advocacy and disability law centers in your state and local community. There are individuals out there who advocate for all of us. Finally, the ADA is in place for far more than just ramps, doors, and access to buildings. The ADA isn’t in place just for educational reading materials nor is it in place just for our students in primary and secondary schools; it is also in place to assist those in need, which include parents with disabilities of non-disabled children.

Helpful Resources

The following resources are examples of advocacy, self-help tutorials in Arizona, and my home state as well as some other state and federal resources.

Arizona Commission for the Deaf and Hard of Hearing

Arizona Center for Disability Law Self-Advocacy Guides

Your Rights: Practicing Self-Advocacy

The ADA, the Supreme Court, and Self-Advocacy

Disability Rights

Americans with Disabilities Act

Americans with Disabilities Act in Context


Topics:
Blind Parenting
Caregiving
Low Vision
Personal Reflections
Self-Advocacy
Disability

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