Hi everyone, before I launch into today’s topic, two announcements. First, I’m co-authoring a book about how we can reset the funder/grantee relationship to minimize power dynamics and allow us all to be more effective at our work and less likely to curl into the fetal position under our desks, rocking and weeping to 80s rock ballads. I’m writing it with Jane Leu and Jessamyn Shams-Lau, and we’re trying to raise $9,600 on Kickstarter by the end of this month. Please pitch in $5, $20, $50, or…$9,600. You’ll get cool prizes such as getting your name in the book for a donation of $5. For $50, you get a t-shirt and the book. For $200, you’ll also get a hand-made unicorn. For $9,600, I will personally fly to your office anywhere in the US and put on a puppet show about the horrors of restricted funding.
Second, last month I issued the #OpEdChallenge, which is simple: Write an op-ed related to your mission and get it published before the end of 2016. We nonprofits must be more vocal, especially in light of the political climate. Some colleagues are actually taking on this challenge! Look: “Seattle must address root causes of racial disparities.” And “Stand with your Muslim neighbors and fight bigotry.” You are awesome. If you’ve successfully taken this challenge, please let me know. Your op-ed may get mentioned here.
I have not written much on NWB about disability. Mainly because I am not an expert on it, and I’m afraid that I’ll make serious mistakes and cause offense. The world is complex, and there are so many ways for us to screw up. I’ve done it at least once already while researching for this post. I asked the NWB Facebook community for tips, writing “Please send in things we should all be aware of, and any pet peeves you have, especially if you work with individuals with disabilities or have a disability.”
This prompted a very patient colleague to write, “We typically don’t ask for feedback from ‘people who work with women or if you happen to be a woman’ or ‘people who work with gays or if you are gay,’ but it happens a lot in disability-world. I think that is something all of us unicorns might examine a bit (our unconscious assumptions of agency and voice of the disability community).”
All of us make mistakes, even when we mean well. But if we are to achieve equity, we must all do our part to address injustice in its various forms, and be willing to stumble, learn, and improve. We all need to do better for our community members with disabilities. Because it is intrinsically the right, the equitable thing to do. But also because it is in our own best interests to create a community that is accessible and inclusive to disabled people, because any of us and the people we love, with age or with life events, may now or in the future have a disability.
So please consider this post a tentative first step for me to increase my awareness and to be a better ally. I’ll probably screw up a few more times. This is certainly not a comprehensive post; disability is complex and varied, and deserves more coverage than just one post. These tips below (most of them simple), contributed by the NWB Facebook community—direct comments are in quotes—are actions all of us in the sector can take right away that may be helpful to our colleagues and clients with disabilities.
- Make sure you include disabled people in the planning if you are working on projects regarding disability. A motto of the disability rights movement is “Nothing about us without us.” Take it seriously.
- Be aware that many disabilities are invisible. “I know a few people who have a brain injury from a car accident. Because it is not visible or obvious, people don’t understand the limitations it causes.They often ask “well what’s wrong with her? She doesn’t look sick” or are questioned when requiring extra breaks or shortened work hours regardless of doctors’ advice.”
- Speak and consult directly with disabled people. They may have their families, friends, interpreters, or caregivers with them, and it is so easy to turn to the helpers and address them instead. Some of us may not even realize that we’re doing that. But it is demoralizing and makes people feel invisible.
- Knock it off with “Must be able to lift 50 pounds” on job postings if it’s not essential to the job. Says a colleague, “In my entire 15+ year career in the non-profit world, there has literally never been an instance where I could not ask another person for help, or use an assistive device.”
- Also stop writing “must have a car and valid driver’s license” if that is not essential either. “Think about whether a ‘valid driver’s license’ is REALLY a requirement for a job or volunteer position before posting it — or are you unintentionally excluding someone who is perfectly capable of coming up with alternative transportation in order to do the job?”
- Be aware of stigmatizing language. Even the most aware of us still thoughtlessly use “lame,” “crazy,” “morons,” “insane,” “OCD,” “schizophrenic,” etc. Saying things like “I have ADHD” when you really don’t, trivializes these serious conditions. Here’s a great article to read: “10 Answers to Common Questions People Ask When Being Called Out for Using Ableist Language.”
- Make sure all your events and meetings are accessible, including the physical space, as well as how to get there, and technology and services such as ASL interpretation and real-time captioning. “Always consider how people will get to the location, give plenty of notice, and offer assistance with transportation if possible. Some people with mobility concerns have very complicated commutes and it can be a juggling act to make sure everything happens when it needs to.” Here’s a quick checklist to make your event more accessible.
- Think about the layout of your events. Is there enough room between tables for people using wheelchairs, for example? “We’re often quick to ensure that people using wheelchairs or other mobility devices are able to attend events—or at least that’s my hope. What if they were presenting, though? Is there a stage that is only accessible by climbing stairs, or a podium that wouldn’t work for someone remaining seated?”
- Create an environment and culture that allows employees or volunteers to ask for accommodations. “Sometimes it’s uncomfortable to ask and also to be asked, so take away as much discomfort as possible by using inclusive, positive language and thinking ahead of what might be needed. Understand that a disability (visible or not) may sometimes interfere with job performance and allow the employee to know this is okay.”
- Be thoughtful when planning for fires, earthquakes, and other emergencies. “Everything from a basic fire drill to an active shooter/violent intruder. Do not assume the same plan options work for everyone, or that someone will help. Help folks identify a buddy if necessary, as well as a backup. ASK people with disabilities how others can help!”
- Respect wheelchairs and service animals. “The wheelchair is an extension of the person. Don’t lean on the chair or try to move it out of your way; that it is rude. Don’t look down on a person in a wheelchair; get to eye level even if that means you need to sit in a chair to have a conversation. If the person uses a service dog please, please, please don’t reach out and pet it…Don’t tell the person you wish you could bring your dog everywhere! The service dog is there to assist the person and help the person live more independently, not cuddle and play fetch with.”
- Provide captions for all your photos and videos, no matter the intended audience. We use a lot of videos and images, but most of them are not captioned. Photos may have captions, but it’s even better to describe the pictures in detail so people who use screen readers can know how awesome that 80’s-themed fundraising auction was. Here’s a helpful guide on how to write descriptive captions for your photos.
- Pay attention to font size. “10 pt Arial isn’t very readable to those with visual challenges!” Having contrasting backgrounds is great too.
- Use plain language. “I am the sole paid staff for a nonprofit run by people who have been labeled with developmental disabilities. One important thing I haven’t seen mentioned yet is the importance of plain language. Forms, documents, etc. should all be simple and easy to understand.” That’s also just effective all-around. Way-too-academic language can be generally off-putting to donors, clients, and volunteers.
- Redefine “professionalism.” The appearance of ‘Professionalism’ is often a struggle for those with sensory processing disorders, executive dysfunction, etc. Meetings and presentations are often geared towards folks who can pay attention or sit still for long periods of time, ‘distractions’ like phones or fidgeting are often perceived as boredom or childishness, but in reality can be coping mechanisms that have been misinterpreted. As someone with executive dysfunction stuff, I know that I process conversations/lectures better when I am physically focused on something else (mini slinky in my pocket, mindless phone game open, a zipper I can mess with), and while that may be fine in smaller meetings, in more formal meetings I often feel the pressure to sit still and make eye contact with the presenter, which actually makes it impossible for me to focus.”
- Assume competence and intelligence. “Use respectful language and tone of voice that you would use with anyone else. People with extreme cognitive delays will still be able to recognize condescension and placating in your voice.”
- Be aware of icebreakers and activities that require movement. Asking people to catch things, to quickly trade places, to stand up to be recognized, etc. “At fundraisers, don’t ask people to stand up as a way of showing that they are donating a certain amount. A sign should do.” Or at least modify the language to acknowledge that some people may not be able to stand up.
- Be aware of well-meaning-but-irritating comments. Don’t say “Get better soon.” It may not be the case for everyone to “get better.” “I have autism. Sick of hearing I don’t look or act like I have autism. What does that mean? It’s a spectrum. We’re not all Rain man or that annoying guy on Big Bang Theory. We DO feel empathy. We feel deeply. We just don’t know how to show it. My struggles are internal. Every time I have to make a phone call it takes tremendous energy.”
- Don’t use deficit language. “Handicapped” is offensive to many, and many of us still use phrases like “wheelchair-bound” or “constricted/confined to a wheelchair.” The alternative may be “so-and-so uses a wheelchair” or “people who use wheelchairs” or maybe “wheelchair-enabled.” Don’t say anyone “suffers” from or is “afflicted with” or is a “victim of” a disability.
- Don’t touch people without asking. “My hands, legs and voice shakes, some days worse than others. Well-meaning folks assume and verbalize all sorts of things including ‘don’t be nervous,’ ‘have more confidence,’ ‘are you ok’ as they grab my hands. Please don’t touch others without permission.”
- Don’t assume anything. “Just because I ask you to repeat yourself it doesn’t mean I’m not paying attention. Inability to concentrate may be a symptom.If I get up to pace while you are speaking, during a conference or education session, it’s not you, it’s me. My joints won’t let me sit too long. I’ll sit in the back if I can, but be aware it could happen. I will probably not eat any of that cake/brownies/kolacki/rugelach you brought in. Oh how I wish I could. Please don’t pressure me to try some.”
- Be flexible with time and locations. “Many people with disabilities require more time to get ready and to travel from one location to another, for example. An 9am meeting or interview may mean they have to get up at 6am.”
- Maybe retire “What do you do?” “For people without disabilities, it’s an easy icebreaker. For people with disabilities that make it hard for them to find work, it can make them feel like they have to justify themselves (and potentially endure invasive questions about their disability and health). You can ask so many other things: What neighborhood do you live in? How do you know (party’s host)? What’s your favorite kind of hummus?”
- Ensure everyone on your board and staff is trained on disability. Many of us get training on other equity issues, but disability often gets overlooked. Even though many disabilities are invisible, many of us unconsciously assume that people don’t have a disability unless it’s visible, so we don’t plan and budget for training unless a person with a visible disability is on our team. Let’s all get more training, period.
- In the meanwhile, we all need to read and reflect more. There are tons of great resources out there. Here are a few that I am reading, recommended by colleagues:
- thebodyisnotanapology.com. Informative website on disability and intersectionality
- http://www.paraquad.org/blog/ Informative (and sometimes hilarious) posts from colleagues with disabilities, and allies
- http://www.adahospitality.org/accessible-meetings-events-conferences-guide/book Great and very comprehensive checklists for when you have meetings, events, and conferences
- http://bbi.syr.edu/projects/Demand_Side_Models/Toolkit.html#arc Great toolkit for employers and includes everything from recruitment to what is reasonable accommodation.
- http://www.cbm.org/Inclusion-Made-Easy-329091.php Helpful if you work in international development
- “No Pity: People with Disabilities Forging a New Civil Rights Movement,” (Eye-opening book given to me by the Colorado Cross-Disability Coalition. Thanks, Julie!)
Thanks everyone. For helping me to become a better, more aware person. And for helping to make our community accessible and inclusive. Please provide additional advice, or feedback, in the comments.
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