Stop Preaching Self-Advocacy: Navigating an Inaccessible World

“Stop Preaching Self-Advocacy: Navigating an Inaccessible World,” in the centre on a blue background. Navy blobs at the top and bottom opposite corners with pink outline blobs.

As people with disabilities, self-advocacy is a concept that is preached to us quite often. The world is not designed with people with disabilities in mind so the responsibilities of accessibility and accommodations falls onto us to create access and participation. No one knows our disabilities and access needs better than us so as individuals, we must advocate for our needs. 

It is an important skill to have. If you are in a situation where access is a concern, bringing attention to your access needs is critical for making sure that you are not wasting your time entering an inaccessible space. But, when is the line crossed from self-advocacy to need to do greater advocacy on our rights?

In order to answer that question, we first need to know what self-advocacy and advocacy in general means in the context of accessibility and disability inclusion. The first consideration to make is that self-advocacy and advocacy do overlap to some degree.

Self Advocacy

Advocacy for an individual, typically referred to an individual advocating for themselves but can also be a trusted person advocating on the individual’s behalf about accessibility needs.

Where Self-Advocacy and Advocacy Overlap 

Both have the goal of creating a barrier-free, inclusive space for people with disabilities to participate meaningfully in activities in our communities.

Advocacy

The act of encouraging action for change on issues, typically from a systematic point of view where decisions are being made that impacts the rights of individuals and groups. In this context, rights of persons with disabilities to access education, employment, healthcare, government services, and community activities.  

Self-advocacy can be a form of advocacy, especially when more interaction with people with disabilities and understanding of barriers, attitudes, and stigma can improve the next person’s experience. It is one piece of a larger puzzle of the types of advocacy and awareness that can be utilized for a better experience.

From personal experience, self-advocacy is a great tool until a certain point. That certain point is when the responsibility of creating an accessible experience should no longer be on persons with disabilities, but the authority in the situation who is making the decisions. 

For example, I have an accessibility accommodations plan at my school (my entire life) that is distributed to all my teachers for the year or term. There is even a meeting with everyone involved (teachers, itinerant teacher, myself, my mother, staff responsible for my accommodation plan, and sometimes, my principal) to discuss my needs and how to make education accessible for me. Self-advocacy in this situation would be reminding my teachers in the beginning until it becomes a habit and talking to them if any new barriers exist that were never discussed before. 

Where it can cross the line is when self-advocacy becomes constant. The teachers expected me to bring up the same concern every time even when I have mentioned it before. For example, constantly reminding teachers of closed captioning, powerpoints/notes for visual reference, and getting my attention during tests when they say something. All consistently a task that needs to be done for me but will not be done unless I remind them, over and over and over. This is an issue because the expectations should be clear from the accommodation plan. There is a difference between forgetting every once in a while and consistently disregarding that there is someone in the room who needs this information in order to participate in the classroom. 

People give up because of this. The push for self-advocacy means that the responsibility is on the person who needs it, not the people who are making the decisions that impact them. When the people making the decisions are okay with disregarding people’s access needs that they are aware of, the emotional fatigue and frustration takes a toll leading to the all so common question, is this a battle I can fight today?

I have given up before. It happened due to the frustration and emotional exhaustion of dealing with my teachers who got advice from my itinerant teacher who is the authority of my access needs in the education system but did not use any of their suggestions and conveniently forgot everything I brought up. At this time, my accommodation policies in my education system left me in a tough spot to wait until I was able to get my audiologist to change my accommodations due to the medical model. 

Self-advocacy is great when we are considering situations where people do not have the information about you or your needs such as events, programs, or a new environment. In situations where systems are in place to obtain and distribute information about disability and accessibility needs, self-advocacy should no longer be the go-to for every encounter. There needs to be a line of what is considered reminders and what is considered a flaw in the system of not adopting accessibility into their work and environment. 

The common issue is that persons with disabilities are not always informed or where that line would be. In fact, it is not always accessible to them. Laws, rights, policies, and documents have specific language that is hard to understand and is not always provided in plain language. It can be difficult to distinguish when there is a policy gap and where there is a process or action gap that requires education and awareness. 

Gaining and growing self-advocacy skills is important in order to provide access to your individual and unique needs. Self-advocacy is critical when it is your own experience and the awareness to state your rights in the environments that you participate in. Knowing where the line is where greater advocacy is needed due to behaviours, attitudes, and stigma is even more important to ensure that frustration is not an isolated experience. There are many people feeling the same frustration and exhaustion of how the system is set up to continue to create barriers. It may feel like you are alone, but you are not. 

There is greater advocacy work that is meant to shift and change policies to create a barrier-free environment. Your experience can help provide reasoning on why these changes are needed on a larger scale. Whether it is acknowledging a gap that others are not aware of, sharing your story (if chosen to) to provide emotional and educational information on why the status quo no longer works, or just living with a disability and wanting that quality of life that you deserve.

Amanda