Inclusive Research – Making research accessible to people with disabilities

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Inclusive Research

Making research accessible to people with disabilities

Webinar 25 February 2021

Lauren Isaacson, Curio Research

www.companyname.com

Gold
Sponsors
Silver
Communications

www.curioresearch.net
@curio_research
3
INCLUSIVE RESEARCH
LAUREN ISAACSON, Research Director at Curio Research

With contributions from Mary Elizabeth Sullivan & Glenda Sims
Photo by Arisa Cha
tt
asa on Unsplash

@curio_research
4
UNDERSTANDING DISABILITIES
LEGAL IMPLICATIONS OF DISABLED EXCLUSION
PEOPLE WITH DISABILITIES AS A MARKET
WHY SHOULD WE MAKE RESEARCH INCLUSIVE
MAKING RESEARCH INCLUSIVE
• Mind Your Manners

• Design Inclusively

• Be Accommodating

• Be Willing to Modify
Photo by Ariel Pilo
tt
o on Unsplash

@curio_research
5
My Experience
Photo by Nathan Anderson on Unsplash

@curio_research
6
Cherry Rae,

My Neighbour

@curio_research
7
Cherry Rae,

Gamer

@curio_research
8
Cherry Rae,

Person with
Disabilities

@curio_research
9
Cherry Rae,

Advocate and
Consultant

@curio_research
10
WHAT IS YOUR DISABILITY
EXPERIENCE?
Photo by Yomex Owo on Unsplash

@curio_research
11
Understanding Disabilities
It’s not one size fits all.
Photo by Audi Nissen on Unsplash

@curio_research
12
Physical
Affects a
person’s
mobility and/or
dexterity
Visual Impairments
Only 5% are
completely
blind. Lots of
variation
Hearing Impairments
Not necessarily
deaf to be
hearing
impaired
Cognitive
Neurological,
learning and
psychiatric
Speech
Includes
stutters and
the inability to
utter sounds
clearly
Major Types of Disabilities
Complexity is easier as an abstraction
NEADS

@curio_research
13
Great Variation Within Categories
But it’s still complex
Visual Impairments
Low Vision Legal Blindness Blindness Acquired Visual
Impairment
Color Blindness Innate Visual
Impairment

@curio_research
14
Something that works for
someone with one arm
will also work for people
with a temporary or
situational disability.
Disability as a Continuum
One Arm
Permanent Temporary Situational

@curio_research
15
People With Disabilities
The size of the market
Photo by Audi Nissen on Unsplash

@curio_research
16
Global USA Canada Europe Asia
Total Population 7.80B 322M 38M 747M 4.64B
PWD Population* 1.85B 80.3M 9.1M 123.9M 1.15B
PWD Income >$3.00T $1.68T $171.2B $1.17T -
PWD Disposable Income >$1.90T $1.28T $82.2B $547.1B -
Friends & Family
Population
3.43B 149M 17M 229M 2.13B
Friends & Family
Disposable Income
>$10.71T $7.10T $538.5B $3.07T -
Disability by the Numbers
Can you afford to ignore over 20% of the population?
Return on Disability 2020 Study

@curio_research
17
2% Children younger than 3-years
Disability Rates Increase with Age
We are getting older and less abled every day
12% School aged children
21% 15-years and older
50% 65 and older
National Institutes of Health

@curio_research
18
Legal Implications
Exclusivity Is a Liability
Photo by Robert Ruggiero on Unsplash

@curio_research
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Australia

Belgium

Canada

Denmark

European Union

Finland

France

Germany

Hong Kong

India

Ireland

Israel

Italy

Japan

Korea

Luxemburg

Netherlands

New Zealand

Portugal

Spain

Switzerland

United Kingdom

United States
Countries with Accessibility Laws
Are you legally accessible where you sell or serve?

@curio_research
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2018
2017
Increase in civil lawsuits under the ADA since 2017
296%
93
Lawsuits Are on the Rise
Inaction is a Liability
814 2,258
SHRM
Seyfarth Shaw
Marine Base Camp Lejeune
2,408
2019

@curio_research
21
Exclusion is Everywhere
We don’t think about it because we
don’t have to. That’s privilege.
Not just the web
•Bus, train, ferry not
accommodating
wheelchairs
Transportation
•Visuals that cause
vertigo

•Controllers requiring
high dexterity
Video Games
•High tables

•Bench seating

•Crowded table
layout
Restaurants
•Too small for
mobility aids

•Mirrors not tilted
down
Bathrooms
Wikipedia

@curio_research
22
Why Make Research Inclusive
It’s more than a kindness
Photo by Carlos Navas on Unsplash

@curio_research
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It’s hard to create for what you’ve never seen
Visibility Matters
Hypable

@curio_research
24
Healthcare Research
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.
National Institutes of Health
ClearVue Health

@curio_research
25
User Experience Research
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
26
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
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
28
Innovation Research
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.
This American Life

@curio_research
29
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
Benefits of Designing for Everyone Report

@curio_research
30
Making Research Inclusive
How?
Photo by Charles 🇵🇭 on Unsplash

@curio_research
31
Just Enough Know-How
Enough to make you dangerous

@curio_research
32
How Do We Make Research Inclusive?
Four elements of inclusive research
BE WILLING TO
MODIFY
BE
ACCOMMODATING
DESIGN
INCLUSIVELY
MIND YOUR
MANNERS
US National Library of Medicine

@curio_research
33
MIND YOUR MANNERS
IT PAYS TO BE POLITE

@curio_research
34
Person First vs. Identity Language
Person WITH a Disability
Preference matters.

Some people prefer using
identity language because
they deeply identify with
their disability and
community.

Others want to use person
first because it recognizes
their humanity before their
disability.
• Autistic

• Blind

• Diabetic

• Paraplegic
Identity Language
• Person with autism

• Person with blindness

• Person with diabetes

• Person with paraplegia
Person First
Wikipedia
Statistics Canada

@curio_research
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Just Ask
Remember, not everyone who
has a disability identifies that
way.

Sometimes your best bet is to
just ask what they prefer.
Statistics Canada

@curio_research
36
Interaction Etiquette
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.
Respectability.org

@curio_research
37
DESIGN INCLUSIVELY
PROVIDING OPTIONS

@curio_research
38
INCLUSIVE RECRUITING
HOW DO WE REACH THEM
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
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,
and so on identifying the difficulty
searching for solutions.
Photo by Jon Tyson on Unsplash

39
DIY Options
Social media and advocacy orgs to the rescue!
REDDIT
• r/disability

• r/disabled

• r/blind

• r/autism

• r/cerebralpalsy
ADVOCACY GROUPS
• The Alliance for
Inclusive Education

• Autistic UK

• British Deaf Association

• European Network on
Independent Living

• Inclusion International
TWITTER/INSTAGRAM
Try various hashtags.

• #a11y

• #disability

• #disabilityawareness

• #inclusion
FACEBOOK GROUPS
• Disability Support
Group

• Hidden Disability

• Scope

@curio_research
40
Traditional
Recruiters
Recruiter Options
Neither are perfect
Specialists
Recruiters
vs.

@curio_research
41
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.
Save for Last Schedule by Severity Trim Your Guide
Scheduling the Session
Timing is key

@curio_research
42
Screeners
Allow for self-identification.

@curio_research
43
Screeners
Include a qualifying
question.

Make sure the qualifying
disabilities are relevant to
the subject you’re
researching.

@curio_research
44
Check your documents
and send them early
• Make sure documents are accessible

- Don’t use scanned documents.

- In MS Word run Accessibility Checker.

- In Adobe (PDF) run Accessibility Check.

• Allow for communication of consent which
doesn’t require a signature.

• Give people plenty of time to process and
read your forms.
Smashing Magazine
Bentley University

@curio_research
45
Provide Multiple Formats
Cover all your bases
WRITTEN AUDIO VISUAL
Smashing Magazine
Bentley University

@curio_research
46
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

@curio_research
47
INCLUSIVE SURVEYS
BECAUSE YOU WANT A RANDOM REPRESENTATIVE SAMPLE
ABOUT

Wikipedia

@curio_research
48
You want your research
platform to be accessible to
people with disabilities.

Web Content Accessibility
Guidelines (WCAG) is the
standard.

• WCAG 2.0 A and AA (now
in US)

• WCAG 2.1 A and AA (now
in Europe, proactive in US)
Is Your Research Platform Accessible?
Just ask
ArsTechnica

@curio_research
49
• Colourblind - Make sure your
colour contrasts are strong enough.

• Low Vision - Keep your text fields
close to row labels.

• Cognitive - Have clear notifications
and indicators.

• Cognitive - Use explicit navigation
text.
You, The Last Line of Inclusivity
What you can do to make surveys WCAG compliant
Smashing Magazine
Bentley University

@curio_research
50
Keep It Simple
If you’re not sure you can get fancy, don’t
If you’re not sure,
keep to basic
question formats.
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.
Some platforms engineer
their survey features to be
both fancy and WCAG
compliant. Ask to be
absolutely certain this is
the case.

@curio_research
51
INCLUSIVE QUAL
BE COMPLIANT ONLINE AND OFFLINE
ABOUT

JISC

@curio_research
52
Reality Test with
Assistive Devices
Make sure participants’ assistive
devices and settings, and yours, are
compatible with the platform you’ll
be using.

And ensure the platform is WCAG
compliant.
Smashing Magazine
Bentley University

@curio_research
53
Coming to You
If they make the extra effort, so should you
Expect to pay a higher
incentive to the person
with a disability because of
the extra effort they have
to make to be present.
HIGHER
INCENTIVE
Make sure the facility is
accessible to the disabled
and don’t just take their
word for it.
CHECK THE
FACILITY
GO
REMOTE
If you are doing IDI’s try to
arrange for one to be
remote. It’s just the path of
least resistance.
Smashing Magazine
Bentley University

@curio_research
54
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?
Smashing Magazine
Bentley University

@curio_research
55
Give Detailed Arrival Instructions
Think through their journey
Give them the best route
to access elevators and
automatic doors.
Know where and which
bathroom accommodates
people with disabilities.
Identify the
nearest disabled
parking spots.
Smashing Magazine
Bentley University

@curio_research
56
They won’t build for accessibility if the demand isn’t there
Ask for WCAG Compliance
Photo by Camylla Battani on Unsplash

@curio_research
57
INCLUSIVE STIMULI
ASSETS EVERYONE CAN ASSESS
ABOUT

Photo by Alireza A
tt
ari on Unsplash

@curio_research
58
Better
Together
Text and Graphics Belong Together
The chocolate and peanut butter of stimuli
Not everyone can
read your words
Text
Not everyone can
see your pictures
Graphics
Smashing Magazine
Bentley University

@curio_research
59
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.
Use Captions and Alt Text
Yes, again with the captions
Wikimedia

@curio_research
60
Watch Your Reading
Levels
Written English is essentially a
non-native language to people
who grew up communicating in
ASL.

@curio_research
61
Some people are easily
overstimulated.

Tell them ahead of time if they
will be hearing or seeing
something odd or
unexpected.
GIVE THEM A
HEADS UP
Photo by Ash from Modern Af
fl
atus on Unsplash
Photo by @chairulfajar_ on Unsplash
Photo by sam bloom on Unsplash
Smashing Magazine
Bentley University

@curio_research
62
BE ACCOMMODATING
HOW CAN WE HELP?

@curio_research
63
Your Limitations
You can’t do everything
Are there disabilities you can’t
accommodate?
PERSONAL
Is some of your tech screen reader
incompatible?
TECHNOLOGICAL
Are any of the facilities
inaccessible?
SITUATIONAL
Photo by Joshua Hoehne on Unsplash

@curio_research
64
Their Limitations
They may not be able to do everything you ask
Communication
Impairment
Shorten the
discussion guide.
Visual Impairment
Find alternatives
to visual stimuli.
Mobility Impairment
Offer to go to
them.

@curio_research
65
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.
Smashing Magazine
Bentley University

@curio_research
66
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.
Smashing Magazine
Bentley University

@curio_research
67
BE WILLING TO MODIFY
THERE IS NO ONE WAY

@curio_research
68
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.
Smashing Magazine
Bentley University

@curio_research
69
Be Flexible
Be prepared to make last minute
changes and roll with the punches.

@curio_research
70
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.
Photo by Jeremy Perkins on Unsplash
Smashing Magazine
Bentley University

@curio_research
71
This is an Opportunity
National Disability Employment

@curio_research
72
THANK YOU
LAUREN ISAACSON

@CURIO_RESEARCH

CURIORESEARCH.NET
Photo by Josh Appel on Unsplash

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Q & A
Ray Poynter

NewMR
Lauren Isaacson

Curio Research

Inclusive Research – Making research accessible to people with disabilities

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