The Role of Body Awareness in Disability Self-Advocacy: Rachel Kaplan's Perspective
Top TLDR
The role of body awareness in disability self-advocacy involves developing intimate understanding of your body's signals, needs, and patterns to effectively communicate accommodation requirements and navigate systems not designed for you. Rachel Kaplan's perspective, grounded in managing type 1 diabetes since age three, emphasizes that body awareness isn't just medical management—it's the foundation for confident self-advocacy, informed decision-making about accommodations, and educating others about invisible disability needs. Strengthen your advocacy by learning to trust your body's signals and translate those experiences into clear accommodation requests.
I was diagnosed with type 1 diabetes at age three, so requesting and advocating for things I needed to be successful and healthy has been at the forefront of many of my experiences. Living with diabetes taught me something fundamental: you cannot effectively advocate for your needs if you don't understand what your body is telling you.
The things that I needed (and still need) to be successful may not make sense to others who don't understand diabetes, especially when they are not day-to-day needs but more often situational accommodations based on blood sugar levels. To explain these needs to teachers, employers, or others, I first had to develop sophisticated awareness of how my body responds to different situations, what symptoms signal specific problems, and what interventions work in various contexts.
This body awareness—understanding the lived experience of disability in your physical self—forms the foundation of effective self-advocacy. It's essential not just for managing disability but for navigating a world that often fails to accommodate disabled bodies and experiences.
Understanding Body Awareness in Disability Context
Body awareness, sometimes called somatic awareness or interoception, refers to the ability to perceive and interpret signals from within your body. For people with disabilities, this awareness takes on heightened importance and complexity.
The Constant Monitoring Required by Disability
Many disabilities require ongoing attention to bodily states and signals. For someone with diabetes, this means:
Recognizing subtle symptoms of high or low blood sugar before they become dangerous
Understanding how different foods, activities, stress levels, and environments affect glucose
Knowing when you need to check blood sugar, eat, adjust medication, or rest
Distinguishing between diabetes-related symptoms and other health issues
Predicting how your body will respond in upcoming situations to plan accommodations
This isn't optional awareness—it's necessary for safety and function. Yet it also builds profound knowledge of your body that becomes invaluable for self-advocacy.
Similarly, people with chronic pain conditions develop expertise in differentiating pain types, triggers, and effective interventions. People with sensory disabilities become attuned to how different environments affect their functioning. People with mental health disabilities learn to recognize early warning signs of symptom increases.
This embodied knowledge—knowing your body from the inside—provides the foundation for explaining your needs to others.
Beyond Medical Management: Body Awareness as Advocacy Tool
While body awareness is essential for managing disability, its role extends far beyond medical compliance. This awareness becomes your primary tool for:
Identifying accommodation needs by recognizing when environments, schedules, or expectations create barriers to your functioning.
Communicating needs clearly by translating bodily experiences into concrete requests others can understand and address.
Evaluating whether accommodations work by monitoring how your body responds to different adaptations and interventions.
Anticipating challenges by understanding how your body typically responds to various situations and planning proactively.
Trusting yourself when others question your needs or suggest you're exaggerating, because you have intimate knowledge of your body's truth.
When I work with organizations on disability inclusion, I emphasize that effective accommodations require listening to disabled people's body awareness and expertise about their own needs.
Personal Experience: Diabetes and Body Literacy
My driving passion for ensuring that kids with diabetes had opportunities to enjoy summer camp experiences, not feel isolated, and build diabetes-specific skills came directly from understanding how body awareness connects to self-esteem and successful self-advocacy.
Learning Body Signals From an Early Age
Being diagnosed with diabetes at age three meant learning body awareness before I had language to describe what I felt. I learned to recognize:
The shakiness, confusion, and hunger that signal low blood sugar
The thirst, frequent urination, and fatigue that signal high blood sugar
The subtle differences between slightly low and dangerously low glucose
How stress, illness, growth, hormones, and countless other factors affect my diabetes management
What my body needs in specific situations to stay safe and functional
This learning process continues throughout life. Diabetes management isn't static—bodies change, circumstances change, and maintaining awareness requires ongoing attention and adaptation.
Translating Body Experience Into Accommodation Requests
As someone with an invisible disability, I had to learn to navigate accommodations in school with a 504 Plan, and then translate those necessary accommodations into employment positions. This translation process requires body awareness.
For example, I can't just say "I have diabetes and need accommodations." I need to explain:
I need to eat at specific times, even if that's during meetings or classes
I need access to my diabetes supplies at all times, including in situations where bags aren't typically allowed
I may need to leave suddenly to address blood sugar issues
I need flexibility in deadlines if diabetes management issues interfere with work
I need understanding that some days my cognitive function may be affected by blood sugar fluctuations
Each of these accommodation requests stems directly from body awareness—from knowing what my body needs and communicating that clearly.
The Advocacy Skills Built Through Body Awareness
Working as Program Coordinator for rising third through fifth graders at summer camp for kids with type 1 diabetes for ten years taught me how body awareness builds broader advocacy skills.
Children who develop confident awareness of their diabetes symptoms become better advocates. They learn to:
Speak up when they don't feel right rather than waiting for adults to notice
Explain what they need to people who don't understand diabetes
Trust their own assessment of their body over others' assumptions
Make informed decisions about their care and activities
Educate peers and adults about diabetes from their lived experience
These skills extend beyond diabetes management to all aspects of disability self-advocacy. Body awareness builds the confidence and expertise needed to advocate effectively.
Body Awareness Across Different Disability Types
While my experience centers on invisible physical disability, body awareness plays crucial roles across all disability categories.
Physical and Mobility Disabilities
People with mobility disabilities develop sophisticated awareness of:
How their bodies move and what movements cause pain or injury
Energy management and when rest is needed
Positioning needs for comfort and function
How different equipment or adaptations affect their body
Environmental factors that create barriers or support access
This body knowledge informs accommodation requests around accessible spaces, seating, equipment needs, pacing, and physical task modifications.
Chronic Pain and Illness
Those living with chronic pain become experts in:
Differentiating pain types and severities
Identifying triggers and patterns
Recognizing when pushing through will cause lasting harm versus when activity is beneficial
Understanding their body's limits and capacity
Managing energy and symptoms strategically
Understanding these individual experiences is essential when organizations develop inclusive policies and practices.
Sensory Disabilities
People with sensory processing differences or sensitivities develop awareness of:
How different sensory inputs affect their functioning and wellbeing
Environments and situations that are overwhelming versus manageable
Strategies that help regulate sensory input
When they need breaks or environmental modifications
How to balance sensory needs with participation in activities
Mental Health Disabilities
In college I was also diagnosed with generalized anxiety, another invisible disability that comes with more stigma than diabetes. Learning to navigate something I did not understand or know how to handle was very challenging, especially when mental health is a taboo topic that people don't feel comfortable discussing.
Through skill building and counseling, I was able to find the individualized tools I needed to feel in control of those overwhelming emotions and feelings. This required developing body awareness of:
Physical manifestations of anxiety (tension, rapid heartbeat, breathing changes, stomach issues)
Early warning signs that anxiety is escalating
What triggers anxiety responses in my body
Which coping strategies work in different situations
How my body feels when anxiety is well-managed versus poorly managed
This body awareness allowed me to communicate my needs, implement effective strategies, and advocate for accommodations when necessary.
Body Awareness and Intersectionality
Having diabetes and anxiety has taught me so much about the individuality of disabilities. Being part of a team of other adults with diabetes in a camp environment made it very clear that what works for one person may not work for another. There is no template that can be utilized for every single person—overarching "blanket statement" stereotypes can result in the dehumanizing process of seeing a person based on a one-dimensional label.
Individual Variation Within Disability Categories
Diabetes, like all disabilities, needs to be approached in an individualized manner where the person who has the disability is acknowledged and respected. This is the same with anxiety. The coping skills and medication combinations are different for everyone—not everyone needs medication, nor does everyone need or benefit from therapy and different coping skills.
Body awareness helps us recognize and articulate this individuality. Two people with the same diagnosis may have completely different bodily experiences, different symptoms, different triggers, and different accommodation needs. Body awareness allows each person to understand and communicate their specific reality rather than conforming to generalized assumptions.
Multiple Disabilities and Complex Body Awareness
Living with both diabetes and anxiety means navigating how these conditions affect each other in my body. Anxiety can raise blood sugar. Low blood sugar can trigger anxiety symptoms. Stress affects both conditions simultaneously.
Understanding these interactions requires sophisticated body awareness that recognizes multiple systems and their interconnections. This complexity is common—many disabled people navigate multiple conditions, and body awareness helps make sense of how they interact.
Cultural and Identity Factors
I am a big advocate in acknowledging the intersectionality of different minority populations and believe that until we understand the impact that history has made on different minority groups, there is not an authentic way to address the issues occurring presently.
Body awareness itself is shaped by cultural context. Different cultures have different relationships with the body, different vocabularies for describing bodily experiences, and different levels of comfort discussing physical needs.
Additionally, experiences like medical trauma, discrimination in healthcare, and historical exploitation affect disabled people's relationship with their bodies and their willingness to trust bodily signals or share body-related information with providers and institutions.
Effective self-advocacy requires both developing body awareness and navigating these cultural and historical factors that shape how we understand and communicate about our bodies.
Teaching Body Awareness in Disability Education
My work in disability education and inclusion emphasizes supporting people—especially youth—in developing body awareness as a foundation for self-advocacy.
Building Disability Pride Through Body Awareness
My passion was ensuring that kids like me had the opportunity to enjoy summer camp experience, not feel isolated and like "the only one" with diabetes, and provide interactive educational opportunities to increase self-esteem, pride in their diabetes, and build some diabetes-specific skills along the way.
Body awareness contributes to disability pride by:
Recognizing your body's wisdom and expertise
Valuing the knowledge gained through lived disability experience
Trusting yourself as the expert on your own needs
Rejecting shame about bodily differences or needs
Celebrating what your body can do rather than focusing only on limitations
When young people develop confident body awareness paired with disability pride, they become more effective advocates who can clearly communicate needs without apologizing for them.
Supporting Youth in Developing Self-Advocacy Skills
Through trainings and educational programming, I help organizations support youth with disabilities in developing advocacy skills grounded in body awareness. This includes:
Creating safe spaces for young people to discuss their bodily experiences without judgment or dismissal.
Providing language that helps youth describe what they feel and experience in their bodies.
Modeling advocacy by demonstrating how to translate body awareness into clear requests.
Validating experiences so youth learn to trust their body's signals rather than doubting themselves.
Building confidence through practice in explaining needs and requesting accommodations.
Connecting youth with disabled peers so they see they're not alone in their experiences.
Adapting Education to Support Body Awareness Development
Educational content and curriculum must be adapted to support body awareness development for students with various disabilities. This means:
Incorporating breaks and movement opportunities that help students regulate their bodies
Teaching self-monitoring skills appropriate to different developmental levels
Respecting when students communicate bodily needs rather than forcing them to wait
Creating environments where discussing bodily needs isn't stigmatized
Ensuring students have vocabulary and support for understanding their experiences
The SCOUT IT Method, which I created to assess curriculum and determine how to make it accessible to people with various disability types, includes attention to how educational activities affect students' bodies and whether adaptations support body awareness and self-advocacy development.
Organizational Implications: Honoring Body Awareness in Inclusion Work
When I consult with organizations on disability inclusion, centering disabled people's body awareness is essential for creating genuinely accessible environments.
Creating Space for Body-Based Accommodation Requests
Organizations must recognize that accommodation needs often stem from body awareness that others cannot directly observe or measure. This requires:
Trusting disabled people as experts on their own bodily experiences and needs.
Believing accommodation requests even when the need isn't visible or doesn't make intuitive sense to non-disabled people.
Providing flexibility for needs that vary based on changing bodily states.
Avoiding interrogation that requires disabled people to prove or justify their body awareness.
Respecting privacy while still providing needed accommodations.
When working with organizations, I emphasize that questioning someone's understanding of their own body is both disrespectful and counterproductive to inclusion.
Supporting Employees in Self-Advocacy
Organizations can support employees' body awareness and advocacy by:
Normalizing discussions about bodily needs and accommodations
Providing clear information about accommodation processes
Training managers to respond supportively to body-based requests
Creating predictable schedules and expectations that allow people to manage their bodies effectively
Designing spaces and policies with flexibility for varying bodily needs
Celebrating diverse bodies and disability experiences rather than treating them as problems
Recognizing the Labor of Body Awareness
Constant body monitoring and management creates significant mental and emotional labor. Organizations should acknowledge this by:
Not penalizing people for time spent on disability management
Recognizing that body awareness and advocacy are work that disabled people do in addition to their primary job responsibilities
Providing accommodations proactively rather than requiring constant self-advocacy
Compensating disabled consultants fairly for the expertise they bring from lived experience
Throughout other employment opportunities I have had, my focus and passion always falls back to: "How can we make these services inclusive?" Part of that inclusion means recognizing and respecting the body awareness that disabled people bring.
Strengthening Your Own Body Awareness and Advocacy
Whether you're newly navigating disability or have lived with disability for years, continually developing body awareness strengthens advocacy capacity.
Practices for Developing Body Awareness
Regular check-ins where you pause to notice what you're feeling in your body without judgment.
Tracking patterns in symptoms, energy, functioning, or needs over time to identify trends.
Experimenting mindfully with different accommodations or strategies while paying attention to how your body responds.
Learning from experience by reflecting on what worked or didn't work in different situations.
Connecting with peers who share your disability to learn from their body awareness and experiences.
Seeking professional support when needed to better understand your condition and bodily experiences.
Translating Body Awareness Into Effective Advocacy
Once you develop body awareness, the next step is communicating it effectively:
Be specific about what you experience in your body and what you need as a result.
Provide examples that help others understand how your body responds in different situations.
Explain patterns so people understand your needs aren't random but based on predictable bodily responses.
Frame requests clearly in terms of outcomes needed rather than just describing symptoms.
Stay firm when others question your body awareness—you are the expert on your experience.
Document needs in writing when possible to create records of accommodation requests and responses.
Building Confidence in Your Advocacy
Effective advocacy requires confidence that your body awareness is valid and your needs are legitimate. Build this confidence by:
Connecting with disability community and culture that affirms your experiences
Educating yourself about your rights and the legal requirements for accommodations
Practicing advocacy in lower-stakes situations before high-stakes ones
Seeking support from disability consultants and advocates who can guide you
Celebrating successes when your advocacy results in needed accommodations
Learning from setbacks without internalizing them as personal failures
The Kintsugi Philosophy: Honoring Our Bodies' Stories
The name Kintsugi has significant meaning for me. Kintsugi is the Japanese tradition and art of mending broken pottery. The cracks created when something is broken are filled with gold or silver so that the item can still be used moving forward. This art form encourages growth, acceptance of flaws, and the opportunity to see the beauty in diversity.
Our bodies—especially disabled bodies—carry stories in their metaphorical cracks. Diabetes has shaped my body's functioning and my relationship with my body. Anxiety has left its marks in muscle tension and heightened sensitivity. These aren't flaws to hide but experiences that have built wisdom, resilience, and deep body awareness.
Body awareness means knowing these cracks intimately—understanding exactly how your body has been shaped by disability and what that means for how you navigate the world. Advocacy means filling those cracks with gold—using that body knowledge to demand accommodations, build community, educate others, and create change.
Let me be the gold that mends the cracks of your organization to create one that can grow from mistakes or missed opportunities while enriching the culture and services being provided to include those within the disability community. Part of that work means helping organizations understand and honor disabled people's body awareness rather than dismissing or questioning it.
Moving Forward: Next Steps for Individuals and Organizations
People with disabilities are not flawed or broken, but the services which are provided often leave them out and can make them feel excluded. When organizations fail to respect body awareness and the self-advocacy it enables, they perpetuate this exclusion.
For Individuals
If you're working to strengthen your body awareness and advocacy:
Start where you are—body awareness develops over time through attention and practice
Trust your experiences even when others question them
Seek community with other disabled people who understand
Learn your rights regarding accommodations and accessibility
Don't hesitate to reach out for support when you need it
For Organizations
If you're committed to supporting disabled people's self-advocacy:
Train staff to respect and respond to body-based accommodation requests
Create policies that acknowledge the legitimacy of body awareness
Build flexibility into structures to accommodate varying needs
Partner with disability consultants who bring lived experience
Center disabled voices in designing accessible environments
Diversity and inclusion are what makes an organization stronger. When organizations honor body awareness as legitimate expertise and support the self-advocacy it enables, they create environments where disabled people can fully participate, contribute, and thrive.
Schedule a consultation to discuss how your organization can better support body awareness and disability self-advocacy in your programs, services, and spaces.
Bottom TLDR
The role of body awareness in disability self-advocacy provides the foundation for understanding your needs, communicating them effectively, and navigating systems that often question disabled people's expertise about their own bodies. Rachel Kaplan's perspective emphasizes that developing intimate knowledge of your body's signals—whether managing diabetes blood sugar fluctuations, recognizing anxiety symptoms, or understanding any disability's impact—builds the confidence and specificity needed for successful advocacy. Organizations strengthen inclusion by trusting disabled people's body awareness, providing accommodations without interrogation, and creating environments where self-advocacy is supported rather than required for basic access.