The Americans with the Disabilities Act (ADA) was signed on July 26, 1990 by President Bush. It has been 30 years since the landmark law was passed to protect people with disabilities in the USA. I wrote an article about the ADA 3 years ago – that I would suggest to read first before continuing on here.
My favorite quote by Plato (as mentioned in the article) is still relevant today. I keep repeating it in my consulting sessions, presentations, and conversations on accessibility. While I’m glad that the ADA protects us people with disabilities in the USA, there’s still a lot more work to make the world fully accessible to us.
This summer is also 40 years that I contracted meningitis. It’s weird to think because this year is when the COVID pandemic put the world on hold for months. Both diseases are dangerous. Meningitis caused me a high fever for a few weeks and kept me in a hospital for a month. Some people survive, some die, some become disabled. I was fighting for my life and survived meningitis at the cost of becoming profoundly deaf in both ears.
I share the photo of myself above because it was taken shortly before I became deaf from meningitis. I was born hearing and could already say a few sentences by the time the photo was taken. After I became deaf, I started to talk less and less and eventually stopped, so I had to go to a speech therapist to learn to speak again.
I have no recollection of becoming sick or losing hearing – I was too young when it happened. I even thought I was born deaf and was surprised when my family told me that I was born hearing like them. Nobody in my family has a history of deafness or any disabilities. As you might imagine, it was a shock to all my family members who were afraid for my future. Doctors didn’t make them feel better and only scared them further.
Back then there weren’t many resources on deafness, and it was during the pre-Internet days. I was also born and raised in Russia that is behind the USA in accessibility. It added more challenges for me and my family. They tried to raise me the best they could.
As time went on, we realized that deafness is not a bad thing. I have never been conscious of my deafness or being different from others. But I constantly have had to prove my abilities as a deaf person, even to my family members. They had no doubt in my abilities. They just wanted me to be happy and to have a simpler life. However, they knew that I had a strong determination to achieve my goals, so they supported me in any way they could. I’m very grateful for that.
Here are some examples of many accomplishments as a deaf person I’m proud of:
- Learning foreign languages: I’m bilingual in Russian (my native language) and English (my third language), fluent in ASL (my fifth language), and know basic RSL (my second language) and French (my fourth language). I also took German classes in college and learned a bit of other languages. I may be deaf but I can communicate!
- Education: My education spanned from grade school in Russian sign language to graduate school in English. In between, I spent 7 years in Russian schools where I was the only deaf student and didn’t have any formal communication access services. I worked hard to excel in school and graduated on top of class.
- Career: After having work experience in design and tech, I started providing consulting services to businesses to help them become more aware of the needs of people with disabilities and more proactive in accessibility. Advising non-disabled people on how to provide optimal accessible solutions to a larger audience is very rewarding for me.
There are many more examples of how I repeatedly had to overcome many incorrect perceptions about deafness – long before the ADA was passed and before I heard of the ADA and my rights as a deaf person. I navigated the world the best way I could.
Also, I did not have deaf role models to look up to when growing up. I followed examples of my hard working hearing family members and some other non-disabled people. When attending a mainstream school, my grandma and I were inspired by the book called “The Fourth Height” by Elena Ilyiana. It was about a young Soviet girl who overcame hurdles in her life. She was not deaf or otherwise disabled, but I was inspired by her because we both were determined to pursue our goals and to reach new heights. Another role model I looked up to was fictional – Wonder Woman. I loved watching the TV series with Lynda Carter and was inspired by the character she played.
My family and I moved to the USA after the ADA was passed, but even then we still didn’t know that. Back then there was no internet access. We watched news mostly on TV. I had to rely on newspapers to get news and could not understand movies and shows because I grew up without captioning access on TV until I was around 15. It was then when my dad brought home a box called a captioning decoder that he happened to find in an electronics store. We were so amazed by this magic box that showed captions on many TV channels! We were not yet aware of the laws that made TV captioning mandatory. That was in the mid 1990s.
Since then, I cannot imagine my life without captioning! There are still quality issues that frustrate many of us deaf people. I’ve researched this topic and started consulting services, wrote a book and gave a TEDx talk on the importance of high quality captions and transcripts for the audio content and how to follow the best practices.
I learned about the ADA at an American university where I had formal communication access. However, the type of communication access did not fit my needs. I used sign language interpreters when I barely knew any sign language. My preference at that time would have been speech to text services. I learned American Sign Language when I started college and it was very challenging for me to understand. If I knew then what I know now, I would have fought to have speech to text access in classes.
Despite having a lot of formal education, I’ve experienced discrimination in employment as many other deaf and disabled people do. Even though I already knew about the ADA by the time I graduated from college, I still did not have enough information on how to better self advocate. For example, one of my bosses told me that she was glad I was deaf not a wheelchair user because I didn’t need any access services. I was dumbfounded. Another example is when I was invited to an interview by an organization where an interpreter could not read my signs and asked me to write down what I signed! It was then I realized that many organizations, even EEO directors and disability office directors, lacked awareness about deaf people and proper communication accommodations. So I started educating them.
As I gained more work experience, I noticed more discrimination not just in education and employment but also in other areas of life. Many events were not accessible. As the internet became more advanced, much of online media was not accessible to deaf people like myself who rely on high quality captions and transcripts. It was also around the time that I learned about the WCAG (Web Content Accessibility Guidelines). I learned and applied the guidelines to become a better web designer and eventually got a certificate in web accessibility. It was then when I started participating in the accessibility community and getting involved with deaf and disability organizations to better understand various needs of people with various disabilities.
While the enthusiasm of non-disabled people about accessibility is appreciated, often accessibility decisions are made by non-disabled people without consultation with disabled subject matter experts. They often come up with solutions that are of little benefit and ignore our advice and suggestions. It’s frustrating!
For example, I regularly see required phone number fields in online forms that frustrate not just deaf people but also many others who don’t feel comfortable using the phone. Despite the availability of modern tools like emailing, texting, online text and video chats, we are still forced by some organizations to make voice calls. I regularly explain why TTY is an outdated technology, why many of us don’t like third party relay services, and why we prefer to use certain communication tools. Yet at times we are forced to use tools that don’t work for us.
Another example is the signing gloves hype that keeps going on for the past 5-20 years. That has caused the uproar in the Deaf community because they are “invented” by various sets of hearing people who don’t understand sign language or needs of deaf people. Not just that, they don’t consult with deaf experts to learn about what we actually need. Besides, why should we deaf people inconvenience ourselves by putting on gloves that don’t work at all?
As many in the disability community say: “Nothing about us without us.”
The most recent example is when Twitter excitedly released audio tweets that enraged the disability community because they are not accessible to deaf people. The designer team was excited to announce that they had an all diverse team, but none of them had a disabled accessibility expert. Twitter admitted to using their employees as volunteers to work on accessibility solutions. This was surprising considering that large organizations like Apple, Google, Microsoft have dedicated accessibility teams that have many disabled experts.
Also, it’s very frustrating that there’s more talk about accessibility than actual actions to implement it, especially by non-disabled people who talk about accessibility. I find it disappointing to find many videos and podcasts about accessibility by persons not living with a disability because they lack proper captions and transcripts.
That’s why I started offering consulting services and speaking engagements. I’m glad to see more events and media accessible based on my advice and recommendations. It makes me feel proud that I can offer advice to non-disabled people not just based on my experience and expertise in accessibility but also my personal experience with deafness. This is a unique combination that helps people better understand the needs of disabled people by learning firsthand about accessibility solutions from an accessibility expert who is deaf.
Also, there’s an ongoing misconception that technology is a magic wand fixing all accessibility issues. It’s far from the truth. For example, I grew up with hearing aids and later got a cochlear implant. While both devices are wonderful technologies, they only enable me to recognize environmental sounds. I still rely on lipreading, text, and sign language. Auto captions do not resolve the accessibility issues as I explained in my TEDx talk. Auto testing tools also can not fix all web accessibility issues.
Not to mention the ongoing lawsuits against organizations who fail to make their digital products and services accessible. The most recent example is a lawsuit against Domino’s Pizza that tried to argue that the ADA does not apply to the digital space.
That’s another reason why I keep reciting the quote by Plato. The ADA was written before the internet. People change, technologies change, and so do laws. Often laws cannot catch up with rapid changes in technologies. That’s why I strongly believe that it’s more important that people have more empathy and understanding about accessibility and needs of disabled people than just blindly following the letter of the law.
I have never understood why organizations and individuals would want to spend money on fighting compliance instead of investing money in accessibility from the start. It not only makes the world more accessible to disabled people, but also improves experience for everyone and increases audience and the bottom line for all businesses. Everyone wins!
Accessibility is not charity. It’s a cost of doing business just like any other business expenses. Also, accessibility is not one time thing to be resolved at the end of the project. It cannot be magically solved by all technologies. It needs to be incorporated from the start of all projects and to be maintained all the time by all team members. Accessibility is as big as any field with various specializations. It’s not something you can learn overnight. You need years of experience and training to become an expert in accessibility.
That’s why I help organizations and individuals become more proactive about accessibility by offering them disability awareness workshops, optimal accessibility strategies for their web, media, events, and providing consulting and training.
Is your business in need of consulting on accessibility strategies or a deaf speaker to talk about accessibility? Contact me – I look forward to working with you!