Book review: ‘On Being Human’ by Jen Pastiloff
September 20, 2019
My biggest struggle while traveling with hearing loss
September 24, 2019How disability advocacy helped me learn self-advocacy
It can be a process to learn how to advocate for yourself with hearing loss.
It’s ironic, but one thing that has really helped me is my work with disability advocacy. I have worked with adults with developmental disabilities for about five years. Little did I know how each step along the way would also open my eyes to a new perspective and teach me something about myself.
Called to Advocate
I started to learn self-advocacy around six years ago, when I started this line of work with women who were disabled and deaf. They had no language or technology to assist them, and I had no idea what sign language was.
If I wanted to show someone how to do something, I would be able to tell if they were interested based on their response (facial reaction, body language, etc). I felt like I had an understanding of these women and I think they felt the same way.
Many people that work in these fields just go through the motions because it’s their job rather than seeing the person as an individual, especially when there is no language. This was the hardest thing for me to accept in social work. But as one of the lowest-paying and overworked career fields in the U.S., I get why it is the way it is.
I immediately felt a calling to be an advocate for these women. Around this time, I slowly started to learn about hand signals to help with understanding.
My Background
I’ve worked at a few different organizations with adults with developmental and intellectual disabilities. Each person I worked with had a certain uniqueness. I felt like most people I met did not conform to society but stayed true to who they were, which was inspiring. I tried to find the qualities in each person that I felt I could learn from. A lot of individuals were advocates in their own way, whether it be speaking up about their disabilities, their anxiety, or other things that were bothering them. I wasn’t used to being so open about things, so this showed me a different approach.
Job Duties
In support work, there are a lot of issues that can come up in a person’s life for which the staff is responsible for assisting. Sometimes you help get someone to a medical appointment and explain to the doctor what has been happening because they are unable to explain or remember. Other times a doctor is prescribing medication and you question their motives and the side effects of the pills. Or you are assisting with making sure a person isn’t getting overcharged on their bills. Maybe the person you are supporting is independent with these responsibilities, but you just want to make sure certain needs aren’t getting overlooked.
Every day is different and anything could arise where the staff needs to step in and be an advocate. Advocacy skills must grow for you to be a strong support in individuals’ lives. I truly enjoyed this work. It gave me a purpose.
Unable To Communicate
One of the organizations I worked with matched me with a woman I could not understand. I didn’t wear or have hearing aids during this time of my life. We often had frustrations. She became frustrated with me because she liked to talk a lot. I became frustrated because I couldn’t understand her. We both meant well, but we were just not a good match. Sometimes that happens. I knew I had to speak up to my manager about this, which took courage.
Read more: How I teach self-advocacy to my hard of hearing children
Meetings Were a Nightmare
Imagine you’re sitting in a work meeting. You are passionate about the work you do and want to participate because you feel you have a lot of important issues to discuss. You can’t hear what’s going on to know when to speak, so you hold back. An idea races in your mind and you decide it’s time to say something. Your heart is pounding from wondering if someone else already said what you want to say. The idea of somebody asking you a question and not being able to hear it terrifies you. You decide to either let it go or speak up, but when you do speak up, your voice is so shaky that advocating for what you believe in suddenly doesn’t sound as strong. You’re sweating, your heart rate is over 120 bpm, and you don’t know how long you will be able to speak. Your words are limited because you just want to get the main points out. Or maybe you decide to not talk at all and you feel awful afterwards.
Imagine this going on at your job every week for years. The times you spoke up about your hearing difficulties, you were told to sit closer. But you still had issues. You had too much shame over it to keep bringing in up. This place you worked is a place where you advocate for other people’s disabilities, yet you can’t even stand up for your own. It’s time to learn self-advocacy!
Root Cause
What was the root cause of this? Shame and embarrassment. These emotions caused me to hide my needs rather than be open about my hearing loss.
Read more: 9 ways to go from coping to thriving with hearing loss
Now, imagine this happening at multiple points in your life, in a variety of scenarios. Would you know how to advocate for yourself with hearing loss? What do you think would happen? Do you think this would affect your body over time? How healthy do you think your mental state would be? Do you think other issues would build on top of those?
Tipping Point
Sometimes it takes experiencing a lot of agony before we can truly stand up for ourselves. Advocacy is a skill that takes time to develop. So many of us are used to helping others before we help ourselves. We have to truly accept our flaws before we can be open about it in a way that our needs are met. Little did I know how helping others would help me. It was a wake up call. I started to realize how I could apply these skills I learned to my own life.
“We have to truly accept our flaws before we can be open about it in a way that our needs are met.”
The Journey
Each time I have advocated for someone else, I became just a little bit stronger as I learned to advocate for myself. By the time I started to work for a third organization, I was open about my hearing loss and how I wanted to work with Deaf and hard of hearing individuals, because this would be the best fit. This made them happy because they needed someone who knew sign language, in which I was becoming fluent. I was able to get accommodations for the new employee orientation in an oversized room. This was the first time in my life I had ever gotten accommodations, all because I knew how to stand up for what I needed. This was just a year ago. I had to learn self-advocacy, and it paid off.
“Each time I have advocated for someone else, I became just a little bit stronger in my own advocacy skills.”
Disability is not a bad word. It just makes you different from the majority. There is actually something kind of special to that and it is something that we should each learn to embrace.
How to advocate for yourself with hearing loss
Each step in learning to advocate for another person helped me learn self-advocacy. I have realized that as a person with a disability myself, people in society will often choose to not believe in you. Many times it is due to lack of understanding of your situation. It’s why it is critical to believe in yourself and learn how to advocate for yourself with hearing loss.
Awareness of self and knowledge of rights are important in any self-advocacy process. Know yourself and your needs. Never be ashamed to ask for them.
Do you know how to advocate for yourself with hearing loss? What tools and tips do you have?
