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Moving the Needle on Employing People with Disabilities: What to Know About Collecting Disability Data

by Chai Feldblum

People with disabilities are disproportionately unemployed and underemployed in this country. The unemployment rate in 2020 for people with disabilities was 12.6% as compared to 7.9% for people without disabilities. People with disabilities also work in lower-level jobs that do not reflect the education and potential they have, or work part-time rather than full time.**

Let’s recognize the multitude of benefits to increasing the number of people with disabilities in an organization across all positions and levels. It is the morally correct thing to do because it increases the economic self-sufficiency of people with disabilities. It enhances the diversity of thinking inside an organization that can result in better project outcomes. And having people with disabilities in an organization can change the culture so that it becomes truly inclusive. 

Foundations and their grantees are increasingly looking to move the needle on the employment of people with disabilities. But to do so, they have to ask about disability.  They need to know how many people with disabilities they currently employ and at what levels. They also must know how many people with disabilities they have on their boards, in their volunteer ranks, and among their vendors. 

To guide you in this process, here are three things to know about collecting disability data. 

No Legal Bar

There is no legal bar to collecting data on disability, as long as the organization is doing so for the purpose of increasing diversity. The Americans with Disabilities Act (ADA), as interpreted by the Equal Employment Opportunity Commission (EEOC), does not prohibit asking applicants or employees to self-identify as a person with a disability if the employer makes clear that: 1) answering the question is completely voluntary; 2) the answer will in no way negatively impact the applicant or employee; and 3) the purpose of collecting the information is to increase the number of people with disabilities in the workplace. Of course, for that purpose, the employer should have a plan ready to use the data it collects to achieve that goal. 

No Privacy Concerns

An organization does not invade the privacy of individuals when it asks them to self-identify as a person with a disability. In collecting data on any characteristic, be it race, ethnicity, gender, disability, or LGBTQ status, an organization should include the option of “I prefer not to answer.” But beyond that, concerns about privacy are often premised on the assumption that a person may want to hide a disability, if it is not apparent, or downplay it, if it is apparent. 

But the concept of “disability pride” is premised on the opposite assumption: that one’s disability is an important aspect of one’s identity, albeit not the only one, and it is nothing to be ashamed of. Stigma around disability is caused by society; it is not inherent in the disability itself. A similar understanding drives the concept of LGBTQ pride. 

I have experienced this on a personal level. When I am given a survey by an employer that asks me to identify my sexual orientation, I am gratified to be able to self-identify as a lesbian. Similarly, when I am given a survey that asks me to disclose if I have a disability, I am gratified to be able to self-identify as a person with the psychiatric disability of anxiety disorder. In both cases, the employer is communicating to me that LGBTQ people and people with disabilities are being seen and acknowledged, and indeed, that they are affirmatively sought to be part of the organization. Allowing people to answer such questions pushes back against a history of silence and stigma. Of course, the employer must make clear that answers to any of the demographic data questions will not be used to discriminate against any individual.

Options for Survey Question Specificity

An organization can choose to ask people whether they have a disability as broadly defined under the ADA, or it can ask respondents to identify more specifically the type of disability/disabilities the person has. 

The advantage of using the broad definition of disability is that it is a simple question: do you have a disability? However, disability under the ADA is extremely broad. It includes any physical or mental impairment that substantially limits a bodily function or major life activity. This definition covers someone who is blind, deaf, has mobility impairments, is a little person, has a developmental disability (for example, autism or cerebral palsy), has an intellectual disability, has a significant speech disorder, or has a significant psychiatric disorder. However, it also covers people with cancer, respiratory or heart conditions, diabetes, epilepsy, depression, anxiety disorder, learning disabilities, ADD or ADHD, and a host of chronic illnesses. Some people with these conditions may consider themselves people with disabilities, while others may not. The survey would need to describe the breadth of physical or mental conditions that are considered disabilities and then ask respondents if they have a disability, as defined in this manner. 

An alternative approach would offer respondents the opportunity to identify specifically the type of disability/disabilities they have. The benefits of this approach are that the responses are likely to be more accurate in capturing the number of people with disabilities and it clearly communicates that the employer presumes no stigma in the self-identification of any disability.

In a diversity survey developed by Change Philanthropy and deployed in 2018, respondents were simply asked whether they self-identified as having a disability. The same survey was deployed in 2020, Diversity Among Philanthropic Professionals Survey (DAPP), but in this version, respondents were provided with a list of different physical or mental conditions and invited to check off any condition they had. Responses increased from 6.3% in 2018 to 12.6% in 2020 of respondents who self-identified as having a disability.   

For that reason, in guidance developed by the Presidents’ Council on Disability Inclusion in Philanthropy, one of the options presented uses the DAPP questions from 2020, with some additional refinements. This approach seems the best one to me. In the guidance, this option asks respondents if they have the following disabilities: blind or low vision; D/deaf or hard of hearing; mobility disability; communication disability; intellectual disability; developmental disability (such as autism or cerebral palsy); learning disability; mental health condition; being a little person; limb difference; facial difference; and chronic illness.

The EEOC took a similar approach in regulations it issued in 2017. These regulations require Federal agencies to collect data on people with all disabilities, as broadly defined by the ADA, as well as data on people with a defined list of significant disabilities (called “targeted disabilities”). Federal agencies must then seek to meet a hiring goal of 12% for people with all disabilities and 2% for people with targeted disabilities. Because people with targeted disabilities are the ones most likely to face hurdles in employment, EEOC wanted agencies to measure their progress separately with regard to members of that group. The list of targeted disabilities used by the EEOC is similar to the list described above, with some differences. For example, the EEOC’s list of targeted disabilities includes significant psychiatric disorders, such as bipolar disorder, schizophrenia, PTSD, or major depression, rather than other wide-spread psychiatric conditions such as depression or anxiety disorder.

Regardless of which approach an organization uses, collecting disability data is key to increasing representation of people with disabilities at all levels within the organization. Doing so can begin to make a dent in the disproportionate unemployment and underemployment of people with disabilities; result in concrete benefits for organizations in terms of diverse and creative thinking, and begin to change our culture to become truly inclusive of people with disabilities.

(**The people with disabilities reflected in this employment data are those who are blind, deaf, have mobility impairments, have significant mental impairments or need help with activities of daily living. Many other people with disabilities, as defined under the Americans with Disabilities Act (ADA), are not included in this data. People with disabilities as broadly defined by the ADA are likely to have higher employment rates, but we do not have data on that based on the information the government currently collects.)

Chai Feldblum is a long-time civil rights advocate and scholar. Chai played a leading role in drafting and negotiating the Americans with Disabilities Act of 1990 and later the ADA Amendments Act of 2008. As a law professor at Georgetown Law in Washington, DC for 18 years, Chai created a Federal Legislation Clinic where she and her students helped non-profit organizations advance their legislative social justice goals. From 2010 to 2019, Chai served as a Commissioner of the Employment Opportunity Commission (EEOC) where she helped advance employment civil rights, including for LGBTQ people (establishing their protection under sex discrimination laws), people with disabilities, and women. She also led a proactive effort to prevent harassment in the workplace. For two years, Chai was a partner at the law firm of Morgan Lewis, where she helped employers work proactively to create safe, respectful, diverse and inclusive workplaces. In 2021, Chai became a freelance civil rights advocate and scholar. She assists with legislative and regulatory work regarding civil rights, particularly for LGBTQ people, people with disabilities and women, and she consults on the full range of diversity, equity and inclusion matters.