Equitable Design for Persons with Disabilities Equitable Design for Persons with Disabilities March 11, 2019 #universaldesign

Warm-Up Activity Unpacking the invisible knapsack of able-bodied privilege

❏ ❏ ❏ ❏ ❏ ❏ ❏ ❏ ❏ ❏ Peggy McIntosh “Unpacking the Invisible Knapsack” Race Ethnicity Physical Abilities Age Religion Sexual Orientation Language Learning Abilities/Styles National Origin Other?

Able-Bodied Privilege Social Expectations Structures Cultural Norms

Let’s unpack our knapsacks...

Discuss

Agenda PART 1 Introduction 1. Warm-up activity 2. Who we are 3. About this workshop 4. Rules of engagement PART 2 Social Model of Disability 1. What is the social model of disability? 2. Terminology - Accessible, Universal, Inclusive, Equitable, etc. 3. Persona Spectrums

PART 3 Establishing the business case 1. Market Size 2. Innovation 3. Cost over time and Longevity 4. Pitch activity PART 4 Wrap up and Questions

Sidebench Sidebench is a leading Corporate Innovation Lab and Startup Venture Studio dedicated to identifying, developing, and launching strategic technology solutions with our partners. Established in 2012 In 2017, expanded into Sidebench Health Works with startups, corporations, and individuals Specializes in strategy, design, and product management

The mission of WITH Foundation is to promote the establishment of comprehensive healthcare for adults with developmental disabilities that is designed to address their unique and fundamental needs. Established in 2002 In 2011, focused on improving healthcare for people with l/DD Grants about $750,000 each year Has provided (in total) more than $7 million in funding support

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Workshop #1 (Pilot) Morning - Designers ● Social model ● Persona Spectrums ● Business case ● Design challenge Afternoon - Designers and PwD Users ● User testing and collaboration

● ● ● ● ● ○ ○ Workshop #2 (Universal Design Symposium) Day 1 Guest speakers Business panel Persona Spectrum Practical Full-Team Directives Day 2 “Beta Day” User Testing USC hackathon participants + other product designers PwD Users 100% of participants indicated that the first day of the workshop increased their understanding and positively impacted their view of universal design “I received a lot of constructive feedback, especially on small design decisions that I’d never notice” - Designer on Beta Day experience

Rules of Engagement No judgement This is a safe place for us to learn and make mistakes No stress, no pressure Show respect to everyone Focus on humans Challenge your assumptions Have fun!

Social Model of Disability

● ● ● Some definitions Accessible: Can be used by anyone, especially with an eye toward disabilities Inclusive: Incorporates multiple perspectives Universal: Can be used by anyone

Socio-Political Model of Disability Socio-Political Model of Disability SOCIAL 'BARRIERS’ Environment Attitudes Organizations \ rlnaccessible -► BUILDINGS SERVICES LANGUAGE COMMUMICATION PREJUDICE STEREOTYPING DISCRIMINATION \ Inflexible PROCEDURES PRACTICES

Stairs make the building inaccessible, not the wheelchair. 9 Socio-Political Model of Disability

What DOES that mean? Culture turns human traits into disabilities A disability only hurts functioning to the extent that a culture lets it

Table of social model solutions to disabilities, from Disability Wales. What DOES that mean? Medical Model Problem Social Model Solution Painful hands, Unable to open jars and doors Better designed lids that are easier to remove. Automatic doors Difficulty standing for long periods More seats in public places “Housebound” or requires use of a wheelchair Put ramps and lifts in all buildings. Provide accessible transportation & parking. Other people won’t give you a job because they think you can’t do it. Educate people to look for disabled people’s knowledge and skills rather than focus on problems. Can’t hear. Sign language; Closed captions. Can’t see. Braille and raised letters. Table of social model solutions to disabilities, from Disability Wales.

What DOES that mean? The absence or impairment of a trait is only considered a disability when everyone is expected to possess it. A disability is often more extreme than typical, not fundamentally different. Part of life - not an event A disability is not a permanent, lifelong state of consistent severity. Depends on environment

What does it NOT mean? It does not mean denying a person’s difficulties/challenges. It does not imply that a person with disabilities should never learn new skills or improve their areas of deficit. It does not imply that we believe making certain social changes would make disabilities disappear forever.

Disability not equal to Personal Human Condition Disability equals Mismatched Human Interactions

Persona Spectrums

Persona Spectrums From Microsoft Inclusive Design Permanent Temporary Situational Touch One arm Arm injury New parent see Blind Cataract Distracted driver Hear Deaf Ear infection Bartender Speak Non-verbal Laryngitis Heavy accent We use a Persona Spectrum to understand related limitations across a spectrum of permanent, temporary, and situational disabilities. It’s a quick tool to help foster empathy and to show how a solution can scale to a broader audience. Microsoft Inclusive Design Microsoft Inclusive Design

Persona Spectrum Permanent Every day Temporary Some period of time Situational Immediate circumstance |

Example #1 - Sight Permanent Blind Temporary Cataract Situational Distracted Driver

Example #2 - Cognitive Load Permanent ADD Temporary Recovering from a concussion Situational Busy/stressed

Example #3 Touch Permanent One Arm Temporary Arm Injury Situational New Parent

21M+ Example #3 - Touch Permanent One Arm 26K Temporary Arm Injury 13M 21M+ Situational New Parent 8M

Build your own Persona Spectrum

Think of something you have difficulty with.

Build your Persona Spectrum I forget things when

Build your Persona Spectrum Situational I forget things when I’m running late to work

Build your Persona Spectrum Temporary Forgetting things due to anaesthesia effects after surgery or recovery from a coma Situational I forget things when I’m running late for work

Build your Persona Spectrum Permanent Forgetting things due to Alzheimer’s Disease/Dementia Temporary Forgetting things due to anaesthesia effects after surgery: recovery from surgery/coma Situational I forget things when I’m running late for work

Now it’s your turn... Think of something you have difficulty with.

Persona Spectrum Permanent Every day Forgetting things due to Alzheimer’s Disease/Dementia Temporary Some period of time Forgetting things due to anaesthesia effects after surgery: recovery from surgery/coma Situational Immediate I foroet things when I’m running late for work

Who we design for If we use our own abilities and biases as a starting point, we end up with products designed for people of a specific gender, age, language ability, tech literacy, and physical ability. Those with specific access to money, time, and a social network.

The Business Case Partially adapted from a presentation for Universal Design Symposium by Jutta Treviranus

● ● ● Business Case Market size Innovation Longevity + Cost over time

Market Size

Any Population A scatterplot representing human needs/traits, with a cluster in the center.

A scatterplot representing human needs/traits, with a cluster in the center.

Estimated 1 billion people worldwide with at least one disability

18.7% of Americans with at least one disability World Health Organization

12% of American population report severe disability World Health Organization

HUGE MARKET

● ● ● Anytime When you least expect it Greatest Probability ...no soft landing because we haven't prepared one

Source: Social Security Administration. The 2018 Annual Report of the Board of Trustees of the Federal Old-Age and Survivors Insurance and Federal Disability Insurance Trust Funds June 2019, and U.S. Census Bureau, Quick Facts, December 2017. Compiled by PGPF. The edge is growing The elderly population of the United States Is growing rapidly. People age 65 and older (% of Total Population) Source: Social Security Administration. The 2018 Annual Report of the Board of Trustees of the Federal Old-Age and Survivors Insurance and Federal Disability Insurance Trust Funds June 2019, and U.S. Census Bureau, Quick Facts, December 2017. Compiled by PGPF.

EVEN BIGGER MARKET

Innovation Innovation

Innovation is found at the edge, not the conventional, comfortable, complacent middie

Ways we inherently prioritize the center The magic formula The quick win Low hanging fruit Beat the system Easy profit

Better for everyone Better for everyone

Innovation at the edge! “Climb into the latest Ferrari sports car and you’ll unlikely to notice the modifications designed with overweight, arthritic pensioners In mind...the Italian carmaker is just one of many companies grappling with a demographic shift that challenges the fundamental rules of marketing and design,..the average buyer of a Ferrari road car is nearing 50 and set to get older.” Financial Times, 10 Jan. 2004

“We wanted to appeal to the broadest possible market, not just a very specific market of arthritics and the infirm” Sam Farber, Founder, OXO Better for everyone "We wanted to appeal to the broadest possible market, not just a very specific market of arthritics and the infirm" Sam Farber, Founder, OXO

“Electronic Curb Cuts,” Steve Jacobs Electronic curb cuts “Electronic Curb Cuts,” Steve Jacobs

“Electronic Curb Cuts,” Steve Jacobs Electronic curb cuts

● ● ● ● ● ● ● ● ● ● Electronic Curb Cuts Typewriter Telephone Headsets Microphone Loudspeaker Email OCR text-to-speech speech-to-text... See Steve Jacobs— electronic curb cuts

Innovation is found at the edge, not the conventional, comfortable, complacent middle

Data Activity

Pair up with someone you don’t know

● ● ● Think of ways you are similar 5 min One thing a surveillance system would detect One thing profiling tools would detect One thing that is undetectable, unexpected We both have brown hair We’re both from Texas We’re both passionate about environmentalism

● ● ● Think of ways you are different 5 min One thing a surveillance system would detect One thing profiling tools would detect One thing that is undetectable, unexpected Adam is taller than Jan Jan is older than Adam Jan is into Rock music, Adam likes Country

Think of one way you’re different from everyone else in the room 5 min Share this with your partner.

How would you rank the things that are most important to your identity?

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When we Design for the Average... Products not made for you Any that are made for you cost more You have fewer degrees of freedom to adapt to a design that doesn’t fit More important that the design is optimized for you

• Design Misfit • Products ↓Availability ↓Reliability ↓Functionality ↑Cost • Knowledge Truth: Evidence ignored Not recognized Not understood • Education Exclusion Mismatch & Failure • Work Exclusion & Barriers • Democracy Charity & Pity Protest & Transgression • Design Fit • Products ↑Availability ↑Reliability ↑Functionality ↓Cost • Knowledge Truth: Evidence Regression to the mean Realization & Homogeneity Statistical Significance & Power The Standard • Education Competition Ranking & Conformance • Work Replaceable Workers • Democracy Majority Rules

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Design with me in mind = curb cut innovation

Longevity + Cost Over Time

Cost Over Time Changes after release cost 10,000 times more than changes made during conceptual design

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2006 court ruling against US Treasury Investing $6.6 Billion

Cost Over Time Plan for the center Plan for the edge

I’m convinced, but how do I convince others?

● ● ● ● ● ● ● ● ● ● ● ● ● ● ● To whom are you talking? Charismatics Thinkers Skeptics Followers Controllers • Easily intrigued by new ideas • Experienced • Makes decisions on facts, not emotions • Tough to persuade • Impressed by data • Slow to decisions • Risk-averse • Highly skeptical of data • Hesitant to change perspective • Can seem combative • Make decisions based on past behavior • Can look to others as examples • Risk-averse • Abhor uncertainty and ambiguity • Focus on pure facts and analytics Enthusiastic, captivating, talkative, dominant Cerebral, intelligent, logical, academic Demanding, disruptive, disagreeable, rebellious Responsible, cautious, brand-driven, bargain-conscious Logical, unemotional, sensible, detail-oriented, accurate, analytical Richard Branson, Steve Jobs, Jack Welch Michael Dell, Bill Gates, A.G. Lafley Warren Buffet, Larry Ellison, Andy Grove Tim Cook, Charlie Munger, Carly Fiorina Alan Mulally, Martha Stewart Ross Perot Source: Change the Way You Persuade. Harvard Business Review, May 2002, Wiiliams, Gary A and Miiier, Robert B

● ● ● ● ● ● ● ● ● ● ● How do you persuade? Charismatics Thinkers Skeptics Followers Controllers • Simple & straightforward arguments • Answer directly to questions asked • Visual aids to stress features and benefits • Have lots of data ready (in backup just in case) • Be prepared to dig into analyses • In meetings, acknowledge people who add credibility to you and your company • Show how things have been done with reputable success cases • Show success cases from others with highlight on concrete impact • Make sure the approach is explained • Best if experts speak or can provide evidence • Allow the audience to absorb data and pause with silence Results, proven, actions, show, watch, easy, clear, focus Quality, academic, think, numbers, intelligent, plan, expert, proof Feel, grasp, power, action, suspect, trust, demand, disrupt Innovative, expedite, expertise, similar to, previous Details, facts, reason, logic, power, handle. Just do it Source: Change the Way You Persuade. Harvard Business Review, May 2002, Wiiliams, Gary A and Miiier, Robert B

Pitch activity 1. Choose a partner 2. Each partner will represent an archetype 3. For 3 min, each partner outlines a pitch for Inclusive design practices that speaks to their partner’s archetype 4. Take turns persuading each other, keeping your pitch under 3 minutes

Pitch toolbox • Estimated 1 billion people worldwide with at least one disability ○ 18.7% of Americans live with at least one disability ○ 12% of American population report severe disability • Ageing populations lead to growing opportunities for inclusive products ○ Projected: By 2025,18% of the US population will be 65+ • Curb cuts are examples of accessible design being useful for everyone ○ Example: A recent study found that 98.6% of university students found closed-captions on lecture videos helpful ­ • Changes after release will cost 10,000x more than changes made during conceptual design ○ Lean accessibility practices are not wholly “different” than or “additional” to current lean product practices and can even increase product longevity with lower cost over time

Wrap Up

What have we covered...? • Unpacked our invisible knapsack • Learned about the social model of disability • Created our own Persona Spectrum • Learned about the business case • Pitched universal design

Take-home Materials • This presentation! • Executive Personas for persuasive arguments • Universal design Pitch Toolbox • Lean Accessibility tips for your team • Lean Accessibility Playbook

Questions?

Thank you! Stay up-to-date: withfoundation.org/digital-health [email protected] Ryan Easterly [email protected] Gassy Gibson Lindsay Garet