No Policies About Us Without Us

by Kyle Chvasta

This question, on the surface, seems simple. If you are like me, and grappled through a high school civics class, this may not initially be a question that is of immediate interest. Isn’t policy just something decided by people on Capitol Hill? Why do I have to think about this right now?  

For many people with disabilities, including myself, it is necessary to be actively aware of policy, because it impacts our daily lives. Who decides what services are covered by my insurance? Why is it so difficult for me to find support for employment? Why am I still on this darn waiting list?? You see, in reality, policy affects many aspects of our lives. Even though we may not think so.  

At work, for instance, a policy from management may seem counterintuitive to the needs of workers. Employees may ask themselves, “Who made this decision?” or, “Who was in the room when this policy was being debated and bargained?” Public policy can ignite these same questions. One may ask if the community or group a policy was meant to address was even present in the planning process.  

What is policy?

In the simplest of terms, policy informs actions; individually and collectively. Policies can be guidelines, rules, regulations, laws, principles, or directives. Policies specify what action is to be done, who will enact it, what guides its application and for (or to) whom it is to have an impact. Additionally, policy is often situated across levels of citizen interaction—public, organizational, and personal. 

When we asked stakeholders to define policy, people had similar definitions.  

“For me, policy is a framework that guides us to act to achieve certain outcomes. It could be good or bad – good policies lead to desirable results whereas bad policies lead to the opposite.” – Researcher  

“Policy is a form of “standard operating procedure.” It is often an expression or interpretation of a statute or guideline made by an organization, agency or other entity. It often provides predictability and may work well for most stakeholders. It often does not work well for outliers or those who do not fit the organization’s expected profile of customer, consumer, or client. Policies almost always work well for the organization itself and promote a statue quo.” – Educator and Advocate  

“A set of parameters established in order to create a standard of behavior, interpersonal interaction, fair and just treatment, and/or many more aspects that are subject to personal interpretation.”  –Research Administrator  

A series of legislation or protocols that define the scope of area/and or interest” – Advocate 

Public policy is meant to address the health, safety, and the welfare of citizens. Public policy is considered ‘effective’ when it solves problems efficiently, upholds justice, supports governmental institutions and policies, and encourages safe and active spaces for citizens.  

How is public policy crafted?   

Analysis of a need or problem, debate, and compromise, informs laws. Easy! Right? That system of laws, regulatory and managerial mandates, and actions, in theory, then shapes our daily lives.  

The process of creating public policy, to the average citizen, can seem confusing. Elected officials, who are meant to be public servants or stewards to their constituents, craft the law-binding rules that impact our lives, and theoretically these policies are meant to produce good or favorable outcomes. That is the idea; execution and outcomes can diverge from intent. But the dizzying journey from the expressed needs of people to the pen of a legislator, to finally impacting people’s lives, can leave one feeling like there are endless hurdles. The influences of lobbying, or administrative obstacles can change the original intent of a bill and its impact on communities.  

Who decides what the policy will be?

This depends on what kind of policy you’re talking about. I get to decide the policy for my household. Leadership gets to decide the policy for my workplace. Lawmakers determine our legal policy, while agency administrators write the regulations to implement program policy. In the end, policies are most often made by people in positions of power. 

Now, if you really weren’t paying attention in civics class, you may imagine that we have no control over policies, or that they are issues that only our elected officials, bureaucrats, or people with administrative power can deal with. Well, this is not true; at least it should not be. 

If a policy affects me, do I get a say

We do, and we should. “Nihil de nobis, sine nobis” or “Nothing About Us Without Us” is the cornerstone for those in the disability and health activism community. This ideology is part of the movement to achieve full participation and democratization of opportunities for, by and with people with disabilities. Disabilities rights advocates and people with lived experience have been campaigning for full inclusion in the policy planning process for decades: 

  • In the 1940s and 1950s, disabled World War II veterans placed increasing pressure on government to provide them with rehabilitation and vocational training. 
  • By the 1960s, the civil rights movement began to take shape, and disability advocates saw the opportunity to join forces alongside other marginalized groups to demand equal treatment, access, and opportunity for people with disabilities. 
  • By the 1970s, disability rights activists lobbied Congress and marched on Washington to include civil rights language for people with disabilities into the 1972 Rehabilitation Act. In 1973, the Rehabilitation Act was passed, and for the first time in history, civil rights of people with disabilities were protected by law. 
  • In the 1980s, disability activists began to lobby for a consolidation of various pieces of legislation under one broad civil rights statute that would protect the rights of people with disabilities, and after years of campaigning and lobbying, the Americans with Disabilities Act (ADA) was passed in 1990. 
  • Also, in the 1980s, for one of the first times in the history of the research to policy pipeline, people living with health conditions were included in the research designing, planning, and implementation process when ACT-UP activists demanded full inclusion in the decision-making activities that impacted the lives of people living with HIV. 

Fast-forward to today, and we are able see this activist spirit at work. Putting pressure on policymakers to make the right decisions. We recently witnessed, in real time, shifts in conversations regarding research, treatment, and care. For example, people living with Long-COVID. Social media campaigns, calls to action, and a demand by people impacted by this emergent condition resulted in $1.15 billion in funding over four years for NIH to support research into the prolonged health consequences of SARS-CoV-2 infection. 

To further progress, it is vital that we have more policymakers with lived experiences in leadership roles, and more community members in the rooms when policy conversations are happening. And not just for lip-service. Policies yield their highest impact when they are informed by actual experiences of those for whom they are developed. 

When people impacted by policy are meaningfully in the room, research is more reflective of communities. Drug costs go down. Affordable and accessible housing is built. Government agencies change their tune regarding public health matters. When people impacted by policy have a voice, policy is more just.   

Further reading