1 INCLUSIVE RESEARCH LAUREN ISAACSON Research Consultant at Curio Research With contributions from Mary Elizabeth Sullivan and Glenda Sims Photo by Arisa ChaDasa on Unsplash www.curioresearch.net
A presentation at ConveyUX in March 2020 in Seattle, WA, USA by Lauren Isaacson
1 INCLUSIVE RESEARCH LAUREN ISAACSON Research Consultant at Curio Research With contributions from Mary Elizabeth Sullivan and Glenda Sims Photo by Arisa ChaDasa on Unsplash www.curioresearch.net
2 UNDERSTANDING DISABILITIES PEOPLE WITH DISABILITIES AS A MARKET LEGAL IMPLICATIONS OF DISABLED EXCLUSION WHY SHOULD WE MAKE RESEARCH INCLUSIVE MAKING RESEARCH INCLUSIVE Photo by Ariel PiloDo on Unsplash • Mind Your Manners • Design Inclusively • Be Accommodating www.companyname.com • Be Willing to Modify © 2016 Jetfabrik Multipurpose Theme. All Rights Reserved.
3 My Experience Photo by Nathan Anderson on Unsplash www.curioresearch.net
4 Cherry Rae, My Neighbour www.companyname.com © 2016 Jetfabrik Multipurpose Theme. All Rights Reserved.
5 Cherry Rae, Gamer www.companyname.com © 2016 Jetfabrik Multipurpose Theme. All Rights Reserved.
6 Cherry Rae, Person with Disabilities www.companyname.com © 2016 Jetfabrik Multipurpose Theme. All Rights Reserved.
7 Cherry Rae, Advocate and Consultant www.companyname.com © 2016 Jetfabrik Multipurpose Theme. All Rights Reserved.
8 W H AT I S YO U R D I S A B I L I T Y EXPERIENCE? Photo by Yomex Owo on Unsplash @curio_research www.curioresearch.net
Photo by Audi Nissen on Unsplash 9 Understanding Disabilities It’s not easy. There’s a lot. @curio_research www.curioresearch.net
Major Types of Disabilities 10 Complexity is easier as an abstraction @curio_research PHYSICAL VISUAL IMPAIRMENTS Affect’s a person’s mobility and/or dexterity Only 5% are completely blind. Lots of variation. INTELLECTUAL/LEARNING HEARING IMPAIRMENTS Learn or process information differently Not necessarily deaf to be hearing impaired. PHYCHIATRIC NEUROLOGICAL Stress related, depression, bipolar disorder, anxiety, and schizophrenia Associated to damage to the nervous system. www.curioresearch.net NEADS
Great Variation Within Categories But it’s still complex Visual Impairments Color Blindness Low Vision Legal Blindness Blindness www.curioresearch.net Innate Visual Impairment Acquired Visual Impairment 11
Disability as a Continuum 12 One Arm Something that works for someone with one arm will also work for people with a temporary or situational disability. Permanent @curio_research www.curioresearch.net Temporary Situational
13 People With Disabilities The size of the market @curio_research Photo by Audi Nissen on Unsplash www.curioresearch.net
Disabilities by the Numbers 14 USA! USA! •6.2% identifies as having a disability ABLE BODIED* •50% of people 75+ have a disability 287 MILLION WITH A DISABILITY 40 MILLION @curio_research www.curioresearch.net Pew Research
Disabilities by the Numbers 15 Oh Canada! • 20% identifies as having a disability ABLE BODIED* • 38% of people 65+ have a disability
Comparative Buying Power 16 It’s worth considering US$490 Americans with Disabilities US$582 Hispanic Americans 147.5 $55 Chinese Canadians $53 South East Asian Canadians $51 US$501 African Americans 0 Canadians with DisabiliXes 295 442.5 590 0 147.5 295 442.5 590 Disposable Income (Billions) This does not include the primary caregivers and loved ones in their lives. eMarketer www.curioresearch.net American Institutes for Research
Disability Rates Increase with Age 17 We are getting older and less abled every day @curio_research 2% Children younger than 3-years 12% School aged children 21% 15-years and older 50% 65 and older www.curioresearch.net National Institutes of Health
18 Legal Implications Exclusivity Is a Liability @curio_research www.curioresearch.net Photo by Robert Ruggiero on Unsplash
19 ADA Americans with Disabilities Act US National Archives, Flickr The Americans with Disabilities Act was passed into law in 1990. It says people with disabilities cannot be discriminated against within any form of public life: Jobs Schools Transportation Any physical space open to the general public And increasingly, the web State Farm, Flickr www.companyname.com Air Force Reserve Command Counse, Flickr © 2016 Jetfabrik Multipurpose Theme. All Rights Reserved. ADA National Network Essential Accessibility
20 ACA Accessible Canada Act • Federally, Canada is late the accessibility regulation party. • Accessible Canada Act (ACA) passed the House and Senate and received Royal Accent in June of 2019. • Canadian Accessibility Standards Development Organization is tasked with developing new federally mandated standards to be enforced by the Accessibility Commissioner. www.companyname.com Disabled World © 2016 Jetfabrik Multipurpose Theme. All Rights Reserved. The Star
Lawsuits Are on the Rise 93 21 Inaction is a Liability 296% @curio_research Increase in civil lawsuits under the ADA since 2017 814 2,258 2,408 2017 2018 2019 www.curioresearch.net Seyfarth Shaw SHRM Marine Base Camp Lejeune
22 Exclusion is Everywhere Not just the web Wikipedia Restaurants Bathrooms •High tables •Bench seating •Crowded table layout •Too small for mobility aids •Mirrors not tilted down Amusement Parks Video Games •Rides not accommodating wheelchairs •Visuals that cause vertigo •Controllers requiring high dexterity We don’t think about it because we don’t have to. That’s privilege. www.companyname.com © 2016 Jetfabrik Multipurpose Theme. All Rights Reserved.
23 Why Make Research Inclusive It’s more than a kindness Photo by Carlos Navas on Unsplash @curio_research www.curioresearch.net
24 I N C L U S I V E R E S E A R C H S U R FAC E S EDGE CASES FOR THE PRODUCT TEAM P EO P L E C A N N OT B E E X P EC T E D TO S O LV E F O R P RO B L E M S T H E Y ’ V E N E V E R S E E N Photo by Alev Takil on Unsplash www.curioresearch.net
Healthcare Research 25 They ARE the target market People with disabilities are often excluded from healthcare research even though they experience poorer health, greater incidence of chronic conditions, and higher health care expenditures than people without disabilities. Health care for adults with disabilities amounts to roughly $750 billion per year, and represented approximately one quarter of 2019 health care expenditures in the United States. ClearVue Health @curio_research www.curioresearch.net National Institutes of Health
User Experience Research 26 They’re more than an edge case Companies with a web presence who do not build and test for accessibility are vulnerable to lawsuits. Ignorance and edge cases are no longer excuses. Solving for “edge case issues” makes systems easier to use for everyone. While sites may be technically accessible, this may not ensure their usability for people with disabilities. Research and testing matter. @curio_research www.curiuoresearch.net
Political and Policy Research They ARE the constituency Governments, political leaders, and policy makers have a responsibility to serve the entire populace. A good way to ensure a policy, an initiative, a service, or a facility is inclusive is through ensuring racial, economic, and ability diversity during every research activity. @curio_research www.curioresearch.net 27
Innovation Research They’re creative AF People with disabilities exercise and utilize high levels of creativity daily to do the relatively mundane things we take for granted, a characteristic most clients should be grateful to hear from. @curio_research www.curioresearch.net 28
Innovation Research 29 When the mundane is a challenge Humorist, David Rakoff, lost the use of his arm as a side effect of radiation treatments for cancer. Listen to him explain the hacks he uses to do some of the common chores we take for granted. www.curioresearch.net This American Life
Higher Production Costs Settlements add up to more than just the fines Trying to retrofit accessible features after the fact can increase production costs by a factor of 10,000 www.curioresearch.net 30
31 Making Research Inclusive How? @curio_research www.curioresearch.net Photo by Charles 🇵🇭 on Unsplash
Just Enough Know-How Enough to make you dangerous @curio_research www.curioresearch.net 32
How Do We Make Research Inclusive? 33 Four elements of inclusive research MIND YOUR MANNERS @curio_research DESIGN INCLUSIVELY BE ACCOMMODATING www.curioresearch.net BE WILLING TO MODIFY US National Library of Medicine
34 M I N D YO U R M A N N E R S I T PAYS TO B E P O L I T E @curio_research www.curioresearch.net
Person First vs. Identity Language 35 Person WITH a Disability Puts the person before the diagnosis. Describes what a person ‘has’ instead of what a person ‘is.’ Disassociates the person from the disorder, disease, or affliction. Identity Language Person First • Autistic • Person with autism • Alcoholic • Person with alcoholism • Diabetic • Person with diabetes • Paraplegic • Person with paraplegia Statistics Canada @curio_research www.curioresearch.net Wikipedia
36 Just Ask Remember, not everyone who has a disability identifies that way. Sometimes your best best is to just ask how they would like to be referred to or treated. @curio_research www.curioresearch.net Statistics Canada
Interaction Etiquette 37 Provide the right help, at the right time Speak directly to the person with the disability, not their interpreter or their companion. Don’t assume they need help. Always ask first. Don’t touch them, their assistive devices, or their service animals without permission. Be attentive and patient when you’re talking with someone who has trouble speaking. If you’re unsure what to do or how to make someone comfortable, ask. @curio_research www.curiuoresearch.net Respectability.org
38 D E S I G N I N C L U S I V E LY P ROV I D I N G O P T I O N S @curio_research www.curioresearch.net
39 ABOUT Over the course of the last decade, however, we seem to have reached a general agreement that creativity involves the production of novel, useful products words, the production of something original and worthwhile. Authors have diverged. Hundred different analyses can be found in INCLUSIVE RECRUITING the literature. As an illustration, one process given described it as a process of becoming sensitive to problems, deficiencies, gaps in HOW DO WE REACH THEM knowledge, missing elements, disharmonies, and so on identifying the difficulty searching for solutions. www.companyname.com Photo by Jon Tyson on Unsplash © 2016 Jetfabrik Multipurpose Theme. All Rights Reserved.
DIY Options 40 Social media and advocacy orgs to the rescue! TWITTER/INSTAGRAM REDDIT Try various hashtags. • #a11y • #disability • #disabilityawareness • #inclusion • r/disability • r/disabled • r/blind • r/autism • r/cerebralpalsy FACEBOOK GROUPS • Disability Support Group • Hidden Disability • Scope www.curioresearch.net ADVOCACY GROUPS • National Federation of the Blind • Council of Canadians with Disabilities • Easter Seals • Goodwill Industries • Parents Helping Parents
Recruiter Options Neither are perfect Traditional Recruiters vs. www.curioresearch.net Specialists Recruiters 41
Scheduling the Session Timing is key Save for Last Schedule by Severity Trim Your Guide If you’re only doing one session with a person or people with disabilities, save it for last. If you are doing multiple sessions with people with disabilities, try to save the more challenging interviews for last. You may have to trim down your guide to just the essential questions, making familiarity with the guide and project especially key. www.curiuoresearch.net 42
43 Screeners Allow for self-identification. @curio_research www.curioresearch.net
44 Screeners Include a qualifying question. Make sure the qualifying disabilities are relevant to the subject you’re researching. @curio_research www.curioresearch.net
45 Send Your Instructions and Forms Early Don’t use scanned documents. Take existing digital text files and either send them as Word or text-based emails or convert them to PDFs. Allow for communication of consent which doesn’t require a signature. Give people plenty of time to process and read your forms. Bentley University @curio_research www.curioresearch.net Smashing Magazine
Provide Multiple Formats 46 Cover all your bases WRITTEN AUDIO VISUAL Bentley University @curio_research www.curioresearch.net Smashing Magazine
Visual Participation Instructions Think IKEA Instructions Participation Instructions 2pm on Monday You will need: • Computer • Strong WIFI • Quiet Space • Earbuds Using a Chrome browser… Go to this URL/Link www.curioresearch.net 47
48 ABOUT Over the course of the last decade, however, we seem to have reached a general agreement that creativity involves the production of novel, useful products words, the production of something original and worthwhile. Authors have diverged. Hundred different analyses can be found in INCLUSIVE SURVEYS the literature. As an illustration, one process given described it as a process of becoming sensitive to problems, deficiencies, gaps in knowledge, missing elements, disharmonies, BECAUSE YOU WANT A RANDOM REPRESENTATIVE SAMPLE and so on identifying the difficulty searching for solutions. www.companyname.com Wikipedia © 2016 Jetfabrik Multipurpose Theme. All Rights Reserved.
Ensure Platform Compliance Just ask You want your research platform to be Web Content Accessibility Compliant. • WCAG 2.0 A and AA (now in US) • WCAG 2.1 A and AA (now in Europe, proactive in US) ArsTechnica @curio_research www.curioresearch.net 49
You, The Last Line of Inclusivity 50 What you can do to make surveys WCAG compliant • Make sure your colour contrasts are strong enough. • Keep your text fields close to row labels. • Have clear notifications and indicators. • Use explicit navigation text. Bentley University @curio_research www.curioresearch.net Smashing Magazine
Keep It Simple If you’re not sure you can get fancy, don’t If you’re not sure, keep to basic question formats. @curio_research Stay away from drag and drops, sliders, and any other fancy features which can to cause people using screen readers or other assistive devices problems. www.curioresearch.net Some platforms engineer their survey features to be both fancy and WCAG compliant. Ask to be absolutely certain this is the case. 51
52 ABOUT Over the course of the last decade, however, we seem to have reached a general agreement that creativity involves the production of novel, useful products words, the production of something original and worthwhile. Authors have diverged. INCLUSIVE QUAL Hundred different analyses can be found in the literature. As an illustration, one process given described it as a process of becoming BE COMPLIANT ONLINE AND OFFLINE sensitive to problems, deficiencies, gaps in knowledge, missing elements, disharmonies, and so on identifying the difficulty searching for solutions. www.companyname.com JISC © 2016 Jetfabrik Multipurpose Theme. All Rights Reserved.
53 Device Compatibility Make sure their assistive devices and settings, and yours, are compatible with the platform you’ll be using. And ensure the platform is WCAG compliant. Bentley University @curio_research www.curioresearch.net Smashing Magazine
Coming to You 54 If they make the extra effort, so should you HIGHER INCENTIVE Expect to pay a higher incentive to the person with a disability because of the extra effort they have to make to be present. CHECK THE FACILITY Make sure the facility is accessible to the disabled and don’t just take their word for it. GO REMOTE If you are doing IDI’s try to arrange for one to be remote. It’s just the path of least resistance. Bentley University @curio_research www.curioresearch.net Smashing Magazine
55 The Room Make sure the table will accommodate a wheelchair and is height adjustable. Doorways and hallways need to be wide enough. Accessible parking? Public transit? Bentley University @curio_research www.curioresearch.net Smashing Magazine
Give Detailed Arrival Instructions 56 Think through their journey Know where and which bathroom accommodates people with disabilities. Give them the best route to access elevators and automatic doors. Identify the nearest disabled parking spots. Bentley University @curio_research www.curioresearch.net Smashing Magazine
57 Ask for WCAG Compliance They won’t build for accessibility if the demand isn’t there www.curioresearch.net Photo by Camylla Battani on Unsplash
58 ABOUT Over the course of the last decade, however, we seem to have reached a general agreement that creativity involves the production of novel, useful products words, the production of something original and worthwhile. Authors have diverged. Hundred different analyses can be found in INCLUSIVE STIMULI the literature. As an illustration, one process given described it as a process of becoming sensitive to problems, deficiencies, gaps in knowledge, missing elements, disharmonies, ASSETS EVERYONE CAN ASSESS and so on identifying the difficulty searching for solutions. www.companyname.com Photo by Alireza ADari on Unsplash © 2016 Jetfabrik Multipurpose Theme. All Rights Reserved.
Text and Graphics Belong Together 59 The chocolate and peanut butter of stimuli Text Not everyone can read your words Graphics Better Together Not everyone can see your pictures Bentley University @curio_research www.curioresearch.net Smashing Magazine
Use Captions and Alt Text 60 Yes, again with the captions Captions and Alt Text are a good idea, period. They help for those with hearing issues, they’re great for people who are in situations where they need to keep their speakers on mute, and they help people who are visually impaired. Wikimedia www.curioresearch.net
61 Watch Your Reading Levels Written English is essentially a non-native language to people who grew up communicating in ASL. www.companyname.com © 2016 Jetfabrik Multipurpose Theme. All Rights Reserved.
62 GIVE THEM A HEADS UP Some people are easily overstimulated. Tell them ahead of time if they will be hearing or seeing something odd or unexpected. Photo by @chairulfajar_ on Unsplash Bentley University www.companyname.com Smashing Magazine © 2016 Jetfabrik Multipurpose Theme. All Rights Reserved. Photo by Ash from Modern Afflatus on Unsplash Photo by sam bloom on Unsplash
63 B E AC C O M M O DAT I N G H OW C A N W E H E L P ? @curio_research www.curioresearch.net
Your Limitations 64 You can’t do everything PERSONAL Are there disabilities you can’t accommodate? TECHNOLOGICAL Is some of your tech screen reader incompatible? SITUATIONAL Are any of the facilities inaccessible? www.companyname.com © 2016 Jetfabrik Multipurpose Theme. All Rights Reserved. Photo by Joshua Hoehne on Unsplash
Their Limitations 65 They may not be able to do everything you ask Communication Impairment Shorten the discussion guide. @curio_research Visual Impairment Find alternatives to visual stimuli. www.curioresearch.net Mobility Impairment Offer to go to them.
66 Be a Good Host Provide a disposable number to call or text you or the number of the facility. Be prepared to meet your participant at their drop off point and walk them into the the facility. Bentley University @curio_research www.curioresearch.net Smashing Magazine
67 Rapport Building Be more aware about your rapport building rituals. Find ways to talk about their disability without coming across as ableist. Give them the opportunity to determine the terms of how their disability is discussed. Bentley University @curio_research www.curioresearch.net Smashing Magazine
68 BE WILLING TO MODIFY T H E R E I S N O O N E WAY @curio_research www.curioresearch.net
69 Have a Backup Plan Prepare for multiple contingencies. While having participants with disabilities bring their own devices is preferable, have something ready in case what they bring doesn’t work with your setup. • Download a trial version of a screen reader program and set the preferences to what they’re most familiar with. You’ll lose time, but you’ll save the session. Bentley University @curio_research www.curioresearch.net Smashing Magazine
70 Be Flexible Be prepared to make last minute changes and roll with the punches. www.companyname.com © 2016 Jetfabrik Multipurpose Theme. All Rights Reserved.
Photo by Jeremy Perkins on Unsplash 71 Allow for Multiple Breaks Research sessions can be challenging for anyone. Be prepared to take breaks every now and then to not overwhelm your participant. Bentley University www.curioresearch.net Smashing Magazine
72 This is an Opportunity www.curioresearch.net National Disability Employment
73 THANK YOU LAUREN ISAACSON @CURIO_RESEARCH CURIORESEARCH.NET Photo by Josh Appel on Unsplash @curio_research www.curioresearch.net
