Although the Americans with Disabilities Act (ADA) and other federal laws ban disability and chronic illness discrimination, discrimination in all areas of policy still exist. While it may not be as overt as it previously was, DCI individuals still face discrimination in their day-to-day lives. This is primarily due to their lack of knowledge about their rights, the lack of knowledge about DCI people’s rights by others, and the exhaustion of fighting for equality on a daily basis. Many instances of discrimination can also be traced to myths about disability and chronic illness.

Cycles of Discrimination

When examining how discrimination develops, it’s easiest to envision a cycle system. First, general societal assumptions influence legal policies. Policies include everything from financial to infrastructure and educational policies at all levels of government.

Policies then influence how government departments, agencies, organizations, and individuals operate and act. This stage may be referred to as policy administration. These factors then influence how people interact with the systems and the individuals in those systems. These interactions, for better or worse, lead to personal experiences and internalized feelings. Then, the cycle repeats as assumptions become mental facts.

This is the last article in a series: Working With the Disability and Chronic Illness Community

To provide an example of the discrimination cycle, let’s look at the employment system. We start with the societal assumption that DCI people cannot work very much, if at all, due to their limitations. With this subconscious idea in mind, policymakers decide to restrict assistance benefits to people with little to no income, to avoid spending public funds on people who they think do not really need support. As people do get a job and start earning an income, their supports and services are taken away because they are showing success.

However, for many people, they need the supports and services they were getting in order to be successful at work. When those necessary services are taken away, they cannot be successful in their job and are forced to quit. This sends the message that they need too much help, are a drain on society, and will never be able to meaningfully contribute to society. People are forced out of the employment system and the cycle repeats.

Causes of Discrimination

As we consider how to combat these issues, it’s important we look at additional factors. The first is that our leaders and lawmakers, more often than not, grew up before the ADA was passed when the DCI community was still segregated from society. Without firsthand knowledge of disabled people during critical periods of their childhood, older adults don’t have accurate information about the diversity of the community and our value.

Second, social service programs frequently trap us in cycles of poverty. As we become more independent by using the supports we need, those same supports get taken away. When the supports we need are taken away, we end up right back in the position we started in.

Lastly, community-based services and accommodations either go  underfunded, or, completely unfunded, causing opportunities to be inaccessible due to a lack of services. This also applies to programming that is only offered in one modality. When we can’t access services that do, or should, exist, we miss out on opportunities to improve our situation.

DCI Inclusive Practices

What can people can do to be better allies to the DCI community? Luckily, there’s so much everyone can do to improve accessibility and inclusion for the DCI community. Here are some things everyone can do in their daily life to help undo some of the problematic structures currently engrained in our society.

First, remove outdated and derogatory DCI language from your vocabulary in all areas, and get comfortable correcting other non-DCI individual’s language. Simply normalizing the words disabled/disability and chronic illness/chronically ill can go a long way in destigmatizing your own feelings about this type of diversity.

Second, I can almost guarantee you know someone with a DCI diagnosis or divergent health status. If you don’t already, ask the people in your life what they need and benefit from, and then honor that without needing constant reminders. For someone who can’t go hiking with you, plan a back porch picnic instead.

Lastly, be understanding when people are not at their best or have to reschedule plans, regardless of their diagnosis. Mental and physical health disabilities are equally important DCI’s to accommodate. People rarely want to cancel plans, but sometimes we just can’t do it. People already feel guilty, so be supportive and keep inviting us to do things in the future. To go a step further, ask if you could help them with anything in place of your fun plans when people do need to cancel. If you know what people struggle with, make direct offers such as cooking dinner, cleaning, or running errands for them.

Workspaces are another critical area of society that needs to improve their inclusion of DCI individuals. A great first step is reviewing your job descriptions and postings, especially if you are currently hiring, and remove unnecessary physical requirements unless they are truly essential to the job.

Unless lifting 25 pounds is a critical function of the job, it isn’t a justifiable requirement. Unless someone is a one-person business, tasks can easily be shuffled to ensure everyone is doing a fair amount of work. Additionally, every organization should develop hybrid, remote work, and flexible schedule policies that everyone can access whenever possible. Again, not every job can be done from home, but many more than we typically thought can be. By normalizing more flexible schedules, the people who really need them to be more successful will avoid the label of receiving special treatment.

Think about how your team works and spends time together. Oftentimes different needs due to personal circumstances and responsibilities outside of work are not considered or honored. For example, if your main bonding activity is going to happy hour once a month, a recovering alcoholic might never feel comfortable joining in, and could be labeled as anti-social. If someone never or rarely participates in social work activities, there’s probably a deeper reason, and it’s up to you to open the discussion up if the person hasn’t said anything before. It’s likely they do not feel comfortable coming to you with concerns.

DCI discrimination is so prevalent in society that it can be easy to miss. To make meaningful changes to the treatment of the DCI community, we have to question every system we are a part of and consider what changes could remove barriers for people. We can all learn and take steps to further this critical work. As history has shown, change will only occur when enough people prioritize the need for change.

—By Erin Vallely

Erin Vallely serves as the Advocacy Specialist at Access to Independence of Cortland County, Inc.  She works with nonprofits, for-profits, government organizations, and individuals to identify and rectify physical and policy-based barriers to disability diversity, equity and inclusion.