An SLP’s Journey into Fighting the Disability Stigma

Dec 18, 2018
9 min read
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Fighting my Own Battle

In addition to being an SLP, I am a person with a disability. Now, as I am in the thick of my 5th year in the field, my understanding of why I became an SLP has changed. I used to think I became an SLP to give back to the therapeutic community. Now I realize I became an SLP to give my students tools to fight back against disability stigma: acceptance, knowledge, and self-advocacy skills.

As a person with a disability, I encounter a fair amount of stigma. While the cause of my disability is invisible, my signature cerebral palsy swagger is apparent to anyone within a 10-foot radius. Each interaction I have with a stranger has the potential to end in tears of hilarity or sadness. Thankfully, I had a strong role model, my mother, who taught me how to combat the stigma I am faced with every day.

The most important ideal she instilled in me is to view my disability as a difference—not something that makes me “less than.” She recognized that some tasks would be more difficult for me, so she helped me to adapt and accomplish them. She also didn’t keep me in the dark. When it came time to visit the doctor, she explained why I was there. I even started participating in my IEP meetings in 1st grade! My mom would always say, “If people are going to be talking about you, you are going to be there too.” She taught me that I had a voice and that my opinion was valuable. Through the years, I went from smiling and nodding to offering my opinion. I learned to take ownership of asking for what I needed to succeed.  I became a strong self-advocate.

I didn’t realize the scope of my mom’s positive influence until I got my first job after college. When I started my career, I worked in an elementary school that served Pre-Kindergarten through 4th grade. I loved working with this age group, but during my 2nd year, I started feeling worn out. My muscles protested the frequent transitions to and from tiny chairs, and it took all my energy just to get through my workday. I knew something wasn’t right. At that point, I hadn’t asked for accommodations at work, but I realized I had to start.

Through the years, my mom had taught me how to analyze my needs and accommodate them with occasional assistance from others, but for the most part, I got used to addressing those needs myself throughout the day. When I started having issues at work, the idea of reaching out for help was a scary prospect. It was the first time I had to ask for official accommodations. Also, I knew that putting them in place was going to be an ongoing process. Each time I met with my boss, the “different not less” mantra was on a loop in my head to remind myself that I was a valuable team member. I gave my boss as much information as I could about my condition. I also told her what I needed in order to be successful, and after several discussions, we made a plan. As a result of this process, I began working with students from 5th to 8th grade and started to feel I was making a greater difference with that group.

At first, the idea terrified me, but over time, I have come to love it. Most people question my sanity when I say I enjoy this particular age group, and I've spoken with plenty of people who aren't sure which SLP setting is best for them. However, I have realized that I love working with these ages because it's the perfect time to start teaching skills to fight stigma. 

By the time students hit 5th grade, exclamations of glee are replaced with groans of disappointment when I appear. This is the age when students start to question the ways of the world, but at the same time, they are trying to figure out where they fit within that framework. Because of this, speech therapy can feel like something that makes you different rather than being a privilege. It becomes a source of stigma, and while learning to talk to their parents can be a helpful skill, it's even more important to give the student themselves the tools to succeed.

Teaching my Patients to Fight Disability Stigma

Sometimes getting students to participate in therapy takes superhuman effort. In these moments, I remind myself of what it was like to be in their place. I was in physical therapy for years. I had the same therapist from the age of 3 to 15. I loved going when I was little, but I experienced the same mindset shift as my students when I turned 10. I didn’t like having to go to therapy, and I struggled to accept that I was different. My therapist and I are Facebook friends now, but those pre-teen and teenage years were hard on both of us. It takes a lot to fight burnout in healthcare, and I'm glad she and I were able to get through.

Similarly, my students feel like speech therapy is something they are being forced to do. It’s something they have no control over. When I feel the black cloud of resentment settling over a group, I pause my plans and demonstrate acceptance. I don’t have an exact methodology when it comes to modeling acceptance because every student is different, but my ultimate goals are to ensure they know voicing frustrations is okay and that they are not alone in their struggles.

From personal experience, I know voicing frustrations lets someone know there is a problem and it is the first step in figuring out how to fix it. Rather than ignoring my students’ groans, I let them voice their annoyances. I make sure they know my room is a safe space, and I listen. Once they finish, I rephrase their statements to let them know I understand their grievances. Often, I tell them of my own experiences with therapy or being teased for my disability. A lot of my students are shocked by the admission. Though my disability and therapeutic needs are different from theirs, presenting the idea that they are not alone in their experiences is a powerful thing. Showing students that there are others with struggles is a strong starting point on the quest to destigmatize disability.   

Stigma also stems from fear of the unknown. I learned very early in life that knowledge helps lessen fear. Due to my disability, I had 7 surgeries by the time I was 7 years old. Hospitals are scary. Especially if you’re someone who goes in perfectly fine and comes out sporting an eye patch or a cast. My mom helped me combat this fear with information. She explained what was going to happen the day of the procedure. More importantly, she told me why it was happening. By knowing what I was in for, I was able to face the hurdles that were coming my way. Knowledge really is power.

With this experience in mind, I give my students as much information as possible. I make sure my students know why they are with me. I review their goals in terms they understand so they can see there is a method to my madness. We may play games, but they always have a purpose. I also pull in real-world issues that relate to the skills we are working on. Running a session with hearing impaired students without an interpreter may seem like a crazy idea, but it was the best way I could demonstrate why working on sentences in speech is so important. In addition to demonstrating real-world applications of their goals, I tell them what happens if they work hard: they graduate. Shocked gasps often follow this proclamation. I have just given them the knowledge that they are in control of their future.

Every year, my first sessions with students include asking them how they learn best. When I ask this question, I describe each of the learning styles in terms they understand (i.e. listening, looking at pictures, working on projects, writing). Asking this question serves 2 purposes. First, it lets me know what kind of support to give them in sessions. Second, it gives my students their first taste of self-advocacy because they are describing what they need from me. I also support their development of self-advocacy by introducing them to the IEP process. Before their IEP meetings, I take time to speak with them. I talk about what’s going to happen in the meeting including questions they are going to be asked. We work together to come up with answers. With continued practice, my students learn to answer these questions independently. By learning self-advocacy skills, they are able to combat stigma because they gain the ability to present their unique strengths in addition to their needs.

I thought I entered this career to give back to the community that helped mold me. Now, I know I’m here to help fight disability stigma. By demonstrating acceptance, providing knowledge, and promoting self-advocacy, I am destigmatizing disability, one student at a time.

About Kate Menzies

Kate Menzies is a speech-language pathologist working in a public school district outside of Austin, Texas. She graduated from Texas State University with a special area of focus in autism spectrum disorders. She has worked with students from ages 3 to 22, but she has a passion for working with upper elementary, middle school, and 18+ students. She has a special interest in working with students with autism spectrum disorders, augmentative and alternative communication needs, as well as hearing loss.