Discover
“We are all different, which is great because we are all unique. Without diversity life would be very boring.”
Catherine Pulsifer
I started my research by studying the notion of social inclusion. It seems that the term “social inclusion” has recently gained a lot of prominence, in the efforts to promote a more inclusive and harmonized society and to combat the concerns arising through social exclusion. The term “social exclusion” was first used by former French Secretary of State for Social Action, René Lenoir in 1974. He used the term to explain the situation of a population segment, that had no access to the domain of social insurance and were being marginalized because of their social status. Since then the term “social exclusion“, described as “the state in which individuals are unable to participate fully in economic, social, political and cultural life, as well as the process leading to and sustaining such a state“, has been used by many developed countries; most recently, by the European Union who devoted 2010 as the “European Year for Combating Poverty and Social Exclusion“.
I started my research by studying the notion of social inclusion. It seems that the term “social inclusion” has recently gained a lot of prominence, in the efforts to promote a more inclusive and harmonized society and to combat the concerns arising through social exclusion. The term “social exclusion” was first used by former French Secretary of State for Social Action, René Lenoir in 1974. He used the term to explain the situation of a population segment, that had no access to the domain of social insurance and were being marginalized because of their social status. Since then the term: “social exclusion“, described as “the state in which individuals are unable to participate fully in economic, social, political and cultural life, as well as the process leading to and sustaining such a state“, has been used by many developed countries; most recently, by the European Union who devoted 2010 as the “European Year for Combating Poverty and Social Exclusion“.
To tackle this notion of “social exclusion“, “social inclusion” was introduced. A simple dictionary definition states that “Social inclusion is the act of making all groups of people within a society feel valued and important.” United Nations has explained “social inclusion” as the process of improving the ability, opportunity, and dignity of people, disadvantaged on the basis of their identity, to take part in society. Inclusion may also be obstructed due to inaccessibility to material resources such as employment or finances, housing, education and healthcare. It is also important to consider that approaches towards social inclusion will differ from place to place, culture to culture since norms and values may be considerably different for everyone. However, despite everything the United Nations 2030 declares that every person should be able to gain access to and benefit from minimum standards of well-being.
Define
During my interview with Claire Davies, a few things that stood out for me were:
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Emphasis on bridging the gap between students and user’s with variable abilities
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“…I’m trying to address this from the engineering perspective by making every engineer who comes into my classroom meet with an end-user with a disability and be aware of it…”
“…engineers were unsure as to how to work with people with disabilities and then gradually as they worked with them more they become aware and more acceptance actually occurs and as a result, it’s more positive…”
Claire
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Teaching the students the ethics and empathy required to work with people with variable abilities;
- There is a difference between telling the students to work with the user and actually training students in ethical and empathetic ways to communicate with the users. There is a major possibility that a student is unaware of how to communicate or talk to users in a respectful and unprejudiced way.
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Designing the right tools to promote independence.
- For years, Claire has been invested in designing tools and assistive devices for people with variable abilities. This passion and commitment comes from her continuous involvement and association with people with variable abilities. Her interest in working for people with variable abilities evolved while she was volunteering at Bloorview Children’s Hospital (now Holland Bloorview Kids Rehabilitation Hospital); while volunteering she realized that the technology available to these children did not allow them the same freedom as other children. Since then she has dedicated her research to improving the lives of people with disabilities.
Develop
After my conversation with Claire and my review of the existing literature, I wanted to understand more about why students, later to become professionals, are so unaware and unsure about communicating and working with variable abilities. In this era, where accessing information has evolved immensely and has become significantly easier; where research has provided us with remarkable approaches such as Inclusive Design, Universal Design, Ability-Based Design, User Oriented Design and /or Human Factors Design; where ideas such as Co-Design and Co-creation are being applied in many fields; why is there so much hesitation and uncertainty when it comes to working with user’s with variable abilities?
A recent report published in 2014 by Scope (a service for people with variable disabilities in the United Kingdom), revealed that 67% of the public feels uncomfortable to converse with a person with variable abilities and that 21% of the public, aged 18 to 34 years, admitted to intentionally avoided interacting with a person with variable abilities. The most common reason for this reluctance to converse with people with variable abilities was uncertainty as to how to communicate; this represents that there is a lack of understanding. Many people have reported that they do not know or they haven’t met a person with a variable ability within their family, friends and/or acquaintances; out of the others who have, most are concerned about not wanting to say the wrong thing.
There is a communication gap between the mainstream people and people with variable abilities which is hindering interaction. Through more everyday interactions and greater public awareness of abilities collaboration may increase between mainstream people and people with variable abilities; however, the main concern for the mainstream user is how to communicate and interact in the right way.
Deliver
“We need to give each other the space to grow, to be ourselves, to exercise our diversity. We need to give each other space so that we may both give and receive such beautiful things as ideas, openness, dignity, joy, healing, and inclusion.”
Max de Pree
It is established that mainstream people are uncertain about how to communicate with variable abilities. Though, the simplest strategy that was reported to be helpful while communicating with people with variable abilities is to regard them as any other common person while being sensitive, flexible and honest. However, due to the different nature of varied abilities, having some basic knowledge about the varied abilities may prevent unintentional stigmatization, discrimination and awkwardness. There are also concerns about terminology; however, those can simply be dealt with by understanding and putting the person first and the impairment last, and also by focusing on ability rather than on inability.
Like any other person, people with variable abilities exercise the use of gestures, facial expressions and body language; relying on these cues and understanding what the person with variable abilities feels or needs can be valuable. Nonetheless, keep in mind that people with variable abilities may sometimes also be from a different culture and might have a different perspective towards abilities. All-in-all always be respectful, polite and compassionate; treat others they way you wish to be treated.
In relation to some types of impairments, this article presents some simple and important suggestions to rely on while communicating with people with variable abilities. These suggestions address some common misconceptions and some helpful guidelines to remember while interacting with people with variable abilities.
Person with vision impairment
Vision impairment, like many other impairments, is a broad term and can vary from person to person. A person with a visual impairment can have partial or complete vision loss. It is inconceivable to determine the level of severity of vision loss by physical appearance, therefore, make no assumptions; if in doubt the best way is to respectfully ask. It is also important to understand that vision impairment is not related to hearing impairment; therefore, a person with a visual impairment may not necessarily have a hearing impairment. Keeping this mind, shouting or speaking loudly may not be the best way of interacting; a normal tone of voice will convey the message effectively.
When meeting or conversing with a visually impaired person, the general etiquette of conversing with any person normally apply. If you are meeting for the first time, identify yourself and others with you; ask for the persons name and address them by their name so they know you are interacting with them. It is also important to choose the right words, for instance, while talking about spatial or directional factors, refrain from using ambiguous terms such as “over there”, “here”, and/or “that”. When talking about directions, always try to orient according to person with a visual impairment; this refers to using their position (left or right, front or back) rather than yours. The key is to be clear and precise.
Person with hearing impairment
Similarly to vision impairment, Hearing impairment may also present itself with variable degrees. It is also important to know that not all people with a hearing impairment present with a speech impairment; do not assume that a hearing impaired cannot speak. To begin interaction, place yourself in the person’s field of vision and speak directly to them. Since you don’t know if and how much they can hear you or if the hearing aid is not visible, speaking loudly may not be necessary. Speak normally and ask if the person can hear you; make sure the person understood you. Being aware of background noise is crucial.
Remember, people with a hearing impairment may lip read, therefore, speak clearly and do not distort lip movements. Present short and clear information at a time; do not show frustration if you have to repeat or reword something over and again. It is also effective to use visual expressions or clues to communicate. If absolutely necessary you can write, sketch or use a smart device to communicate your message. Having sign language interpreters or learning the basics of sign language can also aid interaction; however, if you have a sign language interpreter, speak to the person with the hearing impairment.
Person with speech impairment
A speech impairment can be a stand alone impairment or can appear collectively with other impairments. To eliminate the effect of background noise and distractions, consider conversing in a quieter environment when communicating with a person with speech impairment; you may have to focus on what the person with the speech impairment is saying. However, if you don’t understand something, do not be hesitant to ask the person to repeat themselves; pretending that you understood is not the best approach. If you are unable to understand the message even after it was repeated several times, use visual clues, written text or smart devices. Many times people with a speech impairment may have someone along with them, a family member or an interpreter, who may assist you with communication; however, try to rely on your judgement to get a better sense of how a person with an impairment converses.
Person with a physical impairment
Pitying a person with any impairment is wrong because it emphasizes the impairment and how it might have created an unfavorable life for the person. People who have a physical impairment may not necessarily have issues effecting their communication ability. However, since they may be using a mobility aid like a wheelchair, to be at eye level you should be seated while speaking to them.
Person with a cognitive impairment
In a person with a cognitive impairment, the ability to process information has been effected, therefore, being patient, clear and concise are the key aspects that will facilitate communication. Do not be frustrated if you have to repeat several times; be calm and look for clues that can make the process easier on the person with a cognitive impairment and you as well.
Person with mental health concerns
Mental heath concerns are challenging since they vary significantly from person to person. Mental health concerns can cause behavioral changes; most people can effectively manage mental health concerns through medication and support.
While speaking to a person with a mental health concern keep your tone normal and at a steady pace; be short and clear. Avoid being judgmental when you are interacting with a person with mental health concerns, that can lead to unfavorable behaviors. Overall, you can talk to them as you may with any other person. Access the body language for any signs of change in behavior, however, if you see some unfavorable behaviors do not take it personally and be understanding; see if you can help by contacting a family member for support.
Design Research and Collaborating with Variable Abilities
For years, “design” has been something associated to designers only; many designers have also acclaimed this affiliation and have regarded consulting the user as a mere distraction. Today, as opposed to past thinking, designers are becoming more and more open to the idea of working with the user and the paradigm of design has shifted to a social activity.
“Good design can make the impairment irrelevant (Yelding and Cassim, n.d.).”
A poorly designed product does not facilitate the user, rather it impairs the user, and if the user is a person with varied ability, the poor design turns impairment into inability. While designing for abilities, it is important to take a holistic approach; see it is as a jigsaw puzzle where you have to consider all the pieces for them to fit together. Thus, designing for abilities requires a thorough understanding of the user so that all pieces of the puzzle can be considered to create the bigger picture. It is important to understand that collaborating with users can lead to valuable insights that you as a designer would not have perceived. This is simply due to different perspectives and experiences encountered by the user and the designer. However, due to the communication gap between students and people with variable abilities, students (future professionals) are hesitant to work with users with variable abilities.
Design Research and Recruiting Users
After defining your research topic, be clear about the user segment your research is targeting. However, defining a target audience may not be enough, therefore, define all the parameters that you may want to research. A thorough review of the literature can be a useful tool to create a list of parameters. Once you list the parameters, start defining the methods you want to use to conduct your research and make estimations of the time required; all methods you use should be fully accessible regardless of abilities. At this stage you should also define the criteria for selecting users and start looking at any special accommodations that need to be made. Keeping the rules of accessibility intact, select a medium you will use to get in contact with the user.
Decide on the number of users you want to recruit; if you are a first time researcher consider using small groups. If you consider using a small number of people, make sure they are as diverse as possible within the realm of your research question. This can minimize stigmatization and biases. A diverse group may have people who have some knowledge about your field of work but also those who have no idea about your work. Depending on you research, include people from different age, sex, socio-economic group and background.
When considering people with variable abilities, diversity may encompass the severity of the impairment. Working with abilities may initially seem challenging and overwhelming since there are a wide variety of considerations, severity of impairment being one. However, if you make your process accessible, a lot of issues and concerns can be eradicated. It is also important to acknowledge that each impairment and the level of severity of the impairment effects every person differently and may also vary on daily basis; and that there is also a role of motivation.
Students also have concerns about where to recruit; if you connect with the right people you will find that it is not very hard to recruit people with variable abilities. However, if you have issues recruiting people with variable abilities, you may contact the local welfare organizations and centers. To make your group diverse and also to have people who are unfamiliar with each other try recruiting from multiple centers instead of one. General considerations include, time management, accessibility for all, payment or reimbursement; confidentiality should be stressed.
To conclude, lack of understanding and exposure is not only hindering social inclusion but is also effecting future of design research. Students, Educators, Researchers and all stakeholders have to understand, promote and advocate social inclusion of people with variable abilities. Understanding that there are no strict rules for conversing with a person with variable abilities; however, by simply treating everyone as a person you can fill in most of the communication gap. The communication gap can be further filled by knowledge and experience.
References:
Aiden, H., and McCarthy, A. (2014). Current attitudes towards disabled people (Rep.). UK: Scope.
Definition of ‘social inclusion’. (n.d.). Retrieved December 06, 2017, from https://www.collinsdictionary.com/dictionary/english/social-inclusion
Ho K L, D., Lee, Y., and Cassim, J. (2009). What if…users do not know how to be inclusive through design. Include.
UNDESA – Division for Social Policy and Development (DSPD) Report on the World Social Situation (RWSS). (n.d.). Retrieved December 04, 2017, from http://www.un.org/esa/socdev/rwss/2016/chapter1.pdf
Yelding, D., and Cassim, J. (n.d.). Practicalities of Working with Users. In Design for lnclusivity: A Practical Guide to Accessible, Innovative and User-Centred Design.
ACCESSIBILITY AND INCLUSIVE DESIGN CASE STUDIES 