Sunday, March 23, 2025

Tip #106 A Behavior Analytic Look at Crip Camp and Systemic Ableism

Supporting the Adult Population as a Board-Certified Behavior Analyst (BCBA)


Tip #106 A Behavior Analytic Look at Crip Camp and Systemic Ableism

Like many, I recently watched Crip Camp on Netflix, a film that resonated deeply with my work as a Board Certified Behavior Analyst (BCBA). What started as a Saturday cleaning distraction turned into a powerful reflection on the ongoing struggle for disability rights. The film vividly portrays a 1970s camp where individuals with disabilities experienced unfettered freedom, a stark contrast to the societal limitations they faced outside its boundaries. Judith Heumann’s advocacy, born from her own experiences, led to Section 504, a landmark law mandating accommodations for disabilities. Yet, Denise Sherer’s closing statement, "You can pass a law until you change society that law won't mean a thing," rings painfully true today.

According to the Ethics Code for Behavior Analysts (BACB, 2024), Core Principles #2, Treat Others with Compassion, Dignity, and Respect states:

"Respecting and actively promoting clients's self-determination to the best of their abilities, particularly when providing services to vulnerable populations"

 We are also responsible for being knowledgeable about and comply with applicable laws and regulations related to mandated reporting requirements. As BCBAs, our ethical code demands we treat others with compassion, dignity, and respect, and actively promote client self-determination. However, I’ve observed persistent ableism within the neurodivergent and disability community. Think of it like this: if we consistently reinforce dependence, we create a learned behavior pattern. Remove the reinforcement (the caregiver), and the individual is left without the skills to advocate for themselves. This is a classic example of how antecedent-behavior-consequence (ABC) contingencies shape behavior.

In my practice, I frequently encounter high-priority cases involving severe challenging behaviors. My data suggests these behaviors often function as escape/avoidance, maintained by guardians who disregard the individual's voice or impose treatment plans that don't align with their preferences. This is ableism in action: discrimination that strips individuals of their power. Advocacy groups meetings for the population reveal a common theme: parental anxiety about future care and demands for increased staff pay. While valid, these concerns often overshadow the individual's need for autonomy and skill acquisition.

This leads me to crucial questions: Why aren't we focusing on post-age 21 year old programs that build independence? Why aren't we creating forums for individuals with disabilities to directly express their needs? And why aren't direct care agencies prioritizing programs with clear graduation criteria based on demonstrated autonomy? We need to train staff to minimize ableist practices, fostering respectful adult interactions, promoting healthy sexuality, and supporting safe decision-making.

Let’s look at the data:

The Prevalence of Ableism:

  • Studies consistently show that individuals with disabilities face significant discrimination in employment, housing, and healthcare. For example, the U.S. Bureau of Labor Statistics reports a substantial employment gap, with only 21.3% of people with disabilities participating in the workforce in 2022, compared to 65.4% of those without a disability (U.S. Bureau of Labor Statistics, 2022).
  • Data from the National Council on Disability highlights ongoing barriers to accessible and inclusive community living, with many individuals with disabilities experiencing social isolation and limited opportunities for self-direction (National Council on Disability, 2022). 
  • Furthermore, research shows that individuals with disabilities are far more likely to experience abuse and neglect, often stemming from a lack of autonomy and control over their lives (Administration for Community Living, n.d.).

States and Ableism Culture:

While ableism exists nationwide, certain states, including Delaware, present unique challenges. In Delaware, I consistently observe:

  • Guardianship laws that often prioritize the guardian's wishes over the individual's autonomy, even when those wishes contradict the individual's needs.
  • Residential and day program cultures that impose limitations based on disability, restricting opportunities for employment, social engagement, and personal growth.
  • A lack of adequate resources and training for support staff, hindering their ability to promote independence and self-determination.
  • A lack of resources for individual advocacy groups, and a heavy focus on parental advocacy.

Studies consistently show the prevalence of ableism: significant employment gaps, social isolation, and increased vulnerability to abuse. In Delaware, I’ve witnessed guardianship laws that prioritize guardians over individuals, restrictive program cultures, and a lack of resources for individual advocacy. These are not isolated incidents; they represent systemic barriers.

To combat this, we must prioritize;

  • Individualized Care: Abandon "cookie-cutter" approaches. Conduct thorough Functional Behavior Assessments (FBAs) to identify the function of challenging behaviors. Develop replacement behaviors based on these functions, and utilize peer-reviewed literature to inform treatment. Remember, generalized approaches can act as establishing operations for challenging behavior. Below are educational resources to learn the basics of implementing an FBA:

  • Independence: Collaborate with individuals to define their goals. When working with non-verbal clients, establish immediate communication methods and advocate for speech-language pathology services. Treatment plans should reflect the individual's wants and needs, shifting motivational operations and reducing challenging behaviors.
    • Assent and Assent Withdrawal: Focus on assent and assent withdrawal procedures and methodologies to ensure the individuals voice is heard - 

  • Autonomy: Design treatment plans that empower individuals to make choices. Utilize data to drive decisions and modify plans as needed. Incorporate assent and assent withdrawal procedures to ensure their voice is heard.

As behavior analysts, we have a responsibility to be agents of change. Watch Crip Camp, educate yourself on assent procedures, and remember that every individual, regardless of ability, deserves dignity, respect, and the right to self-determination. If you’re passionate about creating change in your state, let’s collaborate....Either respond to this blog post or shoot me a email shanda2756@gmail.com



If you read this, the seed has been planted... the question is how are you going to apply it...

From the one and only... Shanda J Your BCBA


(Full disclosure: ChatGPT was utilized to find the resources and to edit and modify the original version of this document )


References: 


Administration for Community Living. (N.d). Final Rule: Federal Regulations for APS Programs . Retrieved from https://acl.gov/APSrule. 


Behavior Analyst Certification Board. (2024). Ethics Code For Behavior Analyst. [PDF]. Retrieved on https://www.bacb.com/wp-content/uploads/2022/01/Ethics-Code-for-Behavior-Analysts-240830-a.pdf


National Council on Disability. (2022). Health Equity Framework for People with Disabilities. Retrieved from https://www.ncd.gov/assets/uploads/reports/2022/ncd_health_equity_framework.pdf. 


U.S. Bureau of Labor Statistics. (2022). Persons with a disability: Labor force characteristics, 2022. Retrieved from https://www.bls.gov/news.release/archives/disabl_02232023.pdf 

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Tip #107 Organizational Behavior Management (OBM) Onboarding Systems: Why Are They Important...?

Supporting the Adult Population as a Board-Certified Behavior Analyst (BCBA)