In light of all of these findings, you are probably asking, “How do I make this better?” Others have asked that too and there are several peer organizations in the social sector making monumental strides to include people with disabilities. The Ford Foundation, Jewish Federation of Greater Washington, MacArthur Foundation and others have made great strides on journey to fully include people with disabilities. Each of these organizations is stronger and more successful in their work because of these efforts, and in working with them and others, RespectAbility has developed a proven roadmap.
Inclusion is not like a light switch that simply gets turned on or off. It is more like a dimmer switch that you push forward into the light with intentionality, focus, and performance metrics. It is a journey, not a simple checklist.
To help our social sector colleagues, we humbly offer these suggestions in response to some of the more challenging findings from the study.
4.1. Changing Our Culture and Priorities
While 72 percent of organizations represented by survey respondents have made DEI a priority, only 68 percent of those groups have mentioned disability as an area of focus or concern. In comparison, 93 percent mention race. Similarly, while 78 percent of groups represented in the survey have provided DEI training to staff, only about one-third (35 percent) have included training on disability. So, what can we do?
- Communicate from the top that all people, including people with disabilities, have value and are respected and openly welcomed. This may seem obvious but making the extra effort as it pertains to people with disabilities is important. It should be part of the organizational DNA. Your Board chair, CEO, senior leadership, and staff need to be explicit about the importance of fully including people with disabilities. Websites and all other materials should clearly communicate that disability inclusion is a part of the organization’s vision, mission, and values. It should be an intentional consideration at every stage, not merely assumed or tacked on as an afterthought. Inclusion of all people should be a core consideration of policies, budgets, staffing, recruiting, and planning. Organizations should regularly and repeatedly state that people of all races, ages, abilities, sexual identities, gender orientations, faiths, and other backgrounds are welcomed. These declarations can be made out loud by leadership as well as in publications and on social media. It also must be clear in both word and deed that should the organization or any of its employees, events, or materials make anyone feel unwelcome or inequitably treated, they want to know about it right away, and it will be addressed. (And then of course, follow through on that promise).
- Acknowledge, understand, and embrace the widespread nature of disability. Disability touches every demographic category – gender, age, race, sexual orientation, etc. and impacts most people eventually through accident, illness or aging. 56 million Americans have a disability. When you include the loved ones of people with disabilities, according to polls. the size of the extended disability community is 63 percent of Americans. Some people have disabilities from birth, while others acquire them due to accident, aging, injury, or illness. Certain disabilities are obvious because they require use of a wheelchair or have noticeable physical attributes. However, most disabilities, including those related to learning, attention, mental health, or chronic pain, are invisible and many people with invisible disabilities are still “in the closet” due to stigma. For example, it may not be apparent to you that a longtime board member or large donor is hiding progressive hearing or vision loss, or that a coworker lives with depression, anxiety, or chronic pain. Keep this in mind when considering inclusive practices, as they matter as much for your board room and your office as for public events. Remember that each grant you make, every program you manage, and all events your organization holds or supports are likely to touch people with disabilities. For groups focusing their good work on marginalized populations, this is particularly important. While disability impacts people of all backgrounds, people with multiple marginalized identities (i.e. people of color and/or English language learners who also have a disability) face double discrimination. They are more likely to experience homelessness, live in poverty, or become incarcerated. By incorporating best practices for intersectional issues, you are more likely to increase your success and theirs.
- Walk the walk (or roll the roll) and help your grantees and members do the same. You would not fund programs or sponsor events that deny access to women or people of color and the same should be true for discrimination against people with disabilities. Just one out of five organizations (20 percent) represented in our survey ask their grantees or members to include people with disabilities in their work. Funders can make a big impact by encouraging or requiring that organizations intentionally include the 1-in-5 people who live with some form of disability, by making their work accessible and by helping them budget accordingly.
- Make sure people with disabilities are part of the solution. People with disabilities are ready to contribute their lived experiences to problem-solving and deserve a seat at the table. Because one out of every four adults in America has a disability (including physical, sensory, cognitive, mental health, or other disabilities), it should be a part of your practice to make sure the disability population is represented in leadership and throughout the staff. Our research shows that doing so is a key component to doing better on disability issues across the board. People with disabilities have valuable insight and experience to share as it pertains to disability inclusion (as well as to every other issue apart from disability). Just like when organizations take on issues that affect people of different racial, ethnic, or other backgrounds, people with disabilities should be involved in working on matters that impact them.
4.2. Staffing and Training
Organizations are at their best when they welcome, respect, and involve people of all backgrounds, including people with disabilities. Corporate America already is learning this: Microsoft, Google, Ernst & Young, J.P. Morgan Chase and others are going to great lengths competing for talent and including people with disabilities. A study of 45 U.S. companies by Accenture found companies that recruit and support employees with disabilities have twice the net income and 28 percent higher revenue than those that do not. The Accenture study also found that disability inclusion efforts are a boon to employers regarding increased innovation, improved shareholder value, improved productivity, and enhanced reputation.
The social sector also should actively be looking to put people with diverse disabilities on boards, committees, and staff. Doing so helps make organizations stronger and better able to meet the needs of the populations they serve.
Despite this, fewer than a quarter (23 percent) of respondents in our survey say their organizations make intentional efforts to hire people with disabilities and fewer than half (41 percent) say a process exists where employees, board members, or volunteers can request and receive needed accommodations to help them succeed in their roles. Some ways to improve:
- Recognize the talents of people with disabilities. The public largely views people with disabilities as warm and kind, but not necessarily competent. However, people with disabilities can be exceptionally talented. After all, Beethoven was deaf, Harriet Tubman had epilepsy, Selena Gomez has lupus, Richard Branson is dyslexic, and Steven Hawking had ALS. Some of the most successful, popular, and consequential people in history lived with disabilities.
- Create a plan to both hire and retain employees with disabilities and use vendors that do the same. Only 23 percent of social sector employees surveyed say their organizations make any intentional efforts to recruit people with disabilities for employment, interns, volunteers and/or board positions in their organizations. The work of these organizations would more accurately reflect the communities they serve if people with disabilities are involved. Look to places like RespectAbility, Disability:IN, National Organization on Disability and the Job Accommodation Network (ASKJAN.org) for resources in recruiting, hiring, retaining and promoting employees with disabilities.
- Make a commitment to enable people with disabilities to develop peer relationships, build social skills, and respect and accept each other. Many successful companies, such as EY, JPMorgan Chase, Coca-Cola and others have “Employee Resource Groups” for their employees from historically marginalized groups, including people with disabilities. Such efforts should also extend to people with disabilities. How many employees with disabilities, or employees with family members with disabilities, does your organization have? Do they have a support system with other members of the team? A voluntary, employee-led affinity group for people in similar circumstances could make a big difference.
- Provide training to make inclusion successful. Inclusion is a lot less expensive than most people think, but it still takes intention to do it effectively. Every organization should provide staff training to achieve success. Sessions on disability etiquette and recruitment can make everyone more comfortable with an inclusive workplace. Helpful tools are available online for free from RespectAbility.org or www.ASKJAN.org.
- Update facilities to make them more welcoming to people with disabilities. Facilities should be modernized to accommodate those with disabilities. Important items include adding ramps, widening doorways, ensuring accessible bathrooms and adding automatic openers to main office doors. If renting, some landlords will install accessible features, such as electronic door openers and accessible bathrooms, for free or low cost. Public events should be held only in accessible locations.
- Hire an inclusion director/coordinator to ensure your organization is ready to meet the needs of community members with disabilities. This does not need to be expensive. Trained professionals can be hired as part-time employees. Numerous special educators, therapists, and social workers working in public schools or other institutions may be available to consult on a part-time basis. Be sure to try to find qualified people with disabilities for these roles whenever possible as they can bring valuable experience to your team.
- Understand the role of personal care assistants. Some people may need a personal care assistant to eat, communicate, use the toilet, or handle another issue.They aren’t there to get involved in interactions with friends or coworkers. Their role is to “aid and fade” so people with disabilities can work or make friends. Aides only are involved in interactions at the direction of the person they assist.
Websites and social media are the equivalent of a storefront or lobby. And while no organization wants a person who is deaf or blind to walk in only to be turned away with no attempt to communicate, this happens often at the digital front door. For example, just 14 percent of social sector organizations represented in our survey are producing video content with captions for hard of hearing viewers, even though it often is free and easy to do. Only 17 percent say their websites are set up properly to work with screen readers to make materials accessible to those with low vision. There also is a significant gap in making sure that the content itself sends an inclusive message. Here are a few simple steps to ensure both personal and digital communications convey inclusive values:
- Use appropriate language and etiquette. Two good rules to keep in mind are 1) to always err on the side of language that does not paint disability as inherently negative, and 2) “Ask the Person.” Notwithstanding any style guide, the most important indicator of respectful language is that you honor the preference of the individual with whom you are speaking. The use of certain words or phrases can express bias unintentionally. In all of your communication, try to use appropriate terminology. Some helpful hints:
- Refer to people respectfully and how they want. For example, many people withdisabilities prefer “people-first language,” which respects human beings and their strengths, rather than defining them by their disabilities. An example of people-first language is referring to a child with Down syndrome by his or her name, not the “Down syndrome kid.” People-first language puts the focus back on the people, not on the disability. On the other hand, some within the Deaf community prefer the term “Deaf person” as opposed to “person who is deaf” and some people with low or no vision prefer the term “blind.” Among people on the Autism spectrum, some prefer to be called Autistic people or Autistics rather that people with Autism because they consider their disabilities to be inseparable parts of who they are. Just as you may ask people for their gender pronoun preferences, you should ask people with disabilities how they prefer to be identified.
- Use the word “disability.” Terms like “physically challenged,” “special” and “differently-abled” are seen by some as patronizing. While such terms may seem to equate disabilities with positive qualities, many people see them as needlessly euphemistic, and frequently such words are not used by the people to whom they refer. In addition, people with disabilities are protected under the Americans with Disabilities Act; people with “special needs” are not.
- Think about other language you use. Similar to terminology used with regard to race and sexuality, what is considered acceptable language about disability has changed over time. Words that once were widely used now are considered to be offensive, have negative connotations, or imply inferiority. Other terms are outdated medical or colloquial. Avoid such words as “handicapped,” “suffers from,” “crippled,” or “wheelchair-bound.” A wheelchair is a tool of liberation that allows a person who would not otherwise be able to move around to have relative freedom. Similarly, disability is a fact of life and, like other facts of life, sometimes can have unpleasant consequences. Just as you would never say someone “suffers from a family” even though they may suffer when a loved one gets hurt or dies, it is inappropriate to refer to the fact of disability as a form of suffering just because it has the potential to lead to suffering like so much else in life. Some other words and phrases to avoid:
- People without disabilities are not “normal.” Saying “normal” implies that people with disabilities are “abnormal.” While people without disabilities often are referred to as “able-bodied,” some members of the disability community oppose that usage because it implies that all people living with disabilities lack “able bodies.” Instead, use the term “nondisabled,” “does not have a disability” or “is not living with a disability.” In some cases, the word “typical” can be used to describe a nondisabled condition.
- People with disabilities should not automatically be described as “inspirational” or “courageous” just because they have a disability. Using those words can lead to what some refer to as “inspiration porn,” which assumes that disability itself is so terrible that the mere act of living a normal life with a disability is inspirational. Like anything that turns another human being into a simplified foil or object of pity, the ultimate result is to deny the complex humanity of the person with a disability.
- Other terms to avoid can be found in this companion piece to the National Center on Disability and Journalism’s Style Guide: http://ncdj.org/2015/09/terms-to-avoid-when-writing-about-disability.
- Use the Disability Language Style Guide and related resources. For more on this topic, The National Center on Disability and Journalism (NCDJ) provides the industry’s only disability language style guide. The guide is intended for journalists, communication professionals and members of the general public who are seeking the appropriate and accurate language to use when writing or talking about people living with disabilities. It covers general terms and words on physical disabilities, hearing and visual impairments, mental and cognitive disabilities and seizure disorders. Please note that many of the language suggestions used by RespectAbility in this report and elsewhere are based on these NCDJ guidelines: http://ncdj.org/style-guide.
- Ensure your communications are accessible. Using captions on all audio and video files and making websites that work with screen readers allows the millions of people with hearing difficulties and low vision to have access to your material. Adding text descriptions, often called “alt text” or “alternative text,” to charts, graphs, images and maps so they are discernible by assistive technology is important as well. Other ways to make online content more accessible include using a site index and adding descriptions for materials presented visually. Conduct usability studies for your websites to verify that they work effectively with screen reading and other assistive technology. Ask a person who is blind and regularly uses adaptive computer technology to road test your website and social media. Have a plan in place to ensure that social media postings are accessible, including blog posts and newsletters. While some technologies allow you to add alt text, others do not. To remedy that, short image descriptions can be included in each post. As a bonus, many of these efforts also increase your Search Engine Optimization and reach. If you want to learn more specifically about web accessibility, please view this webinar: https://youtu.be/hSrfeCk_Bzw. Video hosting sites like YouTube provide free tools that allow users to add automated subtitles to their clips. This auto captioning is very helpful but not always perfect, so we recommend double-checking to ensure accuracy. Vimeo also has several options, including uploading your own timecoded transcript, or working with one of their paid transcription services, which will caption your video for a reasonable fee. Making a transcript of the video available online also is helpful.
- Show people with disabilities in photographs, infographics and other images on your website, in social media, and other materials. Only 38 percent of respondents to our survey work at organizations whose materials depict people with visible disabilities such as those who use wheelchairs or have Down syndrome. This is easily resolved by using photos and other images of people with authentic disabilities next to their nondisabled peers. (But please don’t put someone without a disability in a rented wheelchair to accomplish this.)
- Make it obvious that your policies are inclusive. Promote steps you are taking to be more inclusive of individuals with disabilities. Websites and social media accounts should make clear that your efforts are important, intentional, and ongoing. Consider how the photographs and stories you share, the events you advertise, and language you use reflects that people with disabilities are welcomed, valued and included. Websites and social media are critical tools for sharing an organization’s values and offerings.
Example of non-discrimination language that can be included on your website:
“This organization provides equal employment opportunities (EEO) to all employees and applicants without regard to race, ethnicity, religion, sexual orientation, gender identity, national origin, age, disability, genetic information or veteran status. In addition to federal law requirements, this organization complies with applicable state and local laws governing nondiscrimination in employment. This policy applies to all terms and conditions of employment, including recruiting, hiring, placement, promotion, termination, layoff, recall, transfer, leaves of absence, compensation, and training. This organization expressly prohibits any form of workplace harassment based on race, ethnicity, religion, sexual orientation, gender identity, national origin, age, disability, genetic information or veteran status.”
4.4. Event Planning: Inviting in the Public
Social sector organizations are proud of their convening power and for bringing groups together through programs and events. Yet while 72 percent of our survey respondents say their organizations have “public and explicit” policies stating that people with disabilities cannot be denied equal opportunity to participate in services and activities, too few take simple steps to make their programming truly accessible. For example, just 59 percent say their events always are held in physically accessible spaces with accessible parking and transportation options for people with physical disabilities. Fewer than one-third (30 percent) invite participants at public events to request accommodations like sign language interpreters, live captioning, or food allergy alternatives. Considerations like these should be part of all event planning.
- Ensure all program registration and sign up forms are accessible and include questions about accommodations so people can fully participate. Offer people a way to sign up for an event without using a computer, like registering via phone. Common accommodation requests may be for ASL interpreters, live captioning, gluten-free and vegetarian food options.
- Be discreet and respectful. Each accommodation request is an expression of trust by the person with a disability. Let people know in advance that your organization will keep any specific accommodation requests private – and then honor that promise. Treat accommodation requests like you would healthcare information.
- Share materials in multiple ways. Handouts should be provided electronically before or during meetings and presentations for individuals who need to use technology to access and manipulate the materials. Some people may need larger font-sized handouts (16-point font or larger).
- Ensure the space is physically accessible. There are some free, easy steps to take that can make an immediate difference. Keep interior spaces neat and organized so people with mobility limitations can easily navigate the area. Make sure seating is available throughout the entirety of the event including during parts when most people typically stand. Consider having assistive listening devices readily available. Remember that even accessible restrooms might present access challenges. If you have the option, find a wheelchair user to test it out.
Thank you taking the time to explore disability inclusion. Making an intentional effort ensures that people with disabilities are welcomed and treated fairly at events and in employment is critical to diversity, equity, and inclusion overall. General tips to keep in mind:
- Language matters. Use terminology that is inclusive.
- Treat adults with disabilities as adults. Baby talk is not appropriate.
- Speak directly to people with disabilities, not at their aide or sign language interpreter. Talk at eye level; if necessary, sit in a chair to be on the same level as a person who uses a wheelchair.
- Listen patiently and attentively to a person who has difficulty speaking; do not try to finish their thoughts for them.
- Remember that a person’s mobility equipment is part of their personal space. Don’t move a wheelchair, cane, or scooter without their permission.
- Not all disabilities are visible or apparent, but this does not make them any less real.
- Be mindful that people with cognitive or psychological disabilities have varying ways of coping with their conditions.
- Please note it is considered offensive to pretend to have a disability, and disability simulation experiences should be done for design/navigational purposes only.
- If you are unsure how to interact with a person with disabilities, ask them!
In closing, it is clear from this study that nonprofits and foundations are full of good work and good will. Nearly three-quarters (72 percent) of people who work in the social sector say their organizations have a made a public commitment to DEI and have policies that prohibit the group from denying people with disabilities equal opportunity to participate in services and activities. Yet, even among this very well-intentioned group, most are not doing enough – or anything – to provide people with disabilities the access and accommodations they need so they can participate, just like anyone else. Many do not know what they do not know and often have not even thought about ensuring the inclusion of people with disabilities. Even among well-meaning groups who are doing a lot on DEI overall, disability is missing.
What keeps these seemingly supportive and innovative organizations from doing even the bare minimum? According to the survey, bias is the top reason, cited by more than one-third (36 percent) of respondents. Whether overt or implicit, prejudice against people with disabilities is a significant barrier to meaningful inclusion efforts. Hence, people with disabilities – whose talents are considerable and can help strengthen organizations – routinely are turned away. Indeed, only 24 percent of our survey respondents said their boards include even one person with a disability. This is despite the fact that the CDC says that 1-in-4 adults has a disability, and that 66 percent of our social sector respondents say their organizations serve people with disabilities. Additionally, few in positions of power specifically are asking that organizations make including people with disabilities a priority. This means funders and others in leadership positions are not requiring or even suggesting that attention be paid to disability inclusion.
Important to note, having a DEI policy that calls out disability as an area of focus, and including people with disabilities in board, leadership and/or staff positions, makes a big difference. Whether the policies come before the practice or vice versa is not clear from the data, but the correlation is unmistakable. By every measure, groups that are explicit about disability inclusion as a priority and groups with disability representation within their ranks are more likely to be taking action.
The good news is that this is starting to happen. 12.4 million people have jobs in the American nonprofit sector. In the last year, roughly 30 percent of all new jobs for people with disabilities in the United States were created in the nonprofit sector.
- In 2017, 826,824 workers with disabilities had jobs with nonprofit organizations.
- The disability employment rate among nonprofit employers increased from 8.9 percent to 9.1 percent between 2016 and 2017.
- There were 33,922 new nonprofit jobs for people with disabilities in 2017.
Clearly, the potential here is enormous for people with disabilities, nonprofit organizations and the people they serve.
Many steps to further the inclusion of disability in DEI initiatives are quite easy to take and come without cost. All that is required is the intention to do better. Learn more at https://www.respectability.org/inclusive-philanthropy.