Research Paper By Charlene Moynihan
(Ability Coach, UNITED STATES)
A man is worked upon by what he works on. He may carve out his circumstances, but his circumstances will carve him out as well. –Frederick Douglass
Diversity is inherent in everything we experience such as nature and its multitude of variance, and, people and their cultures. If we are to truly celebrate differences, we must begin by knowing and understanding those differences. As coaches, that knowing/understanding must begin with ourselves. As one who will work with those who have a relationship to a disability, I must have knowledge and awareness of disability culture.
Moreover, as an individual with a disability, I must understand what it is that makes me different than others if I am to truly approach this endeavor with a celebratory mindset.
ICA teaches us that
Culture exists in the minds of the individuals that have learned from other human beings what is acceptable in their interactions with other human beings. Culture allows us to communicate with one another in a language that we have learned and share in common. -International Coach Academy
With the understanding that coaching sessions are about the client and not the coach, how to promote my work to potential clients has much to do with who I am and how I present myself. I felt I needed to address the issue of how much of my personal experience to share in the promotional process since how I am perceived affects the assessment of a good fit between coach and client.
This brings up the dilemma that many potential clients will face, exactly what, when, and how much is appropriate to disclose when it comes to disability. As a person with an acquired disability, it was a question that I needed a comfortable answer to. If I can understand the process it takes to answer that question, I can recognize a similar struggle and the need to address it with my clients.
I looked to disability theory with a particular focus on the language used to speak about disability for some insight. The language we use communicates much about who we are, how we think, and what we believe. This paper will focus on the language used to speak of disability.
Let’s start with an explanation of the predominant models of disability theory.
The Medical Model
The medical model of disability talks of it in terms of impairment, deficiency, and/or abnormality. It is something that exists within the body/the person and it is the person’s responsibility to learn how to deal with it. The medical field seeks to cure and/or treat the disability with therapies that are aimed at making the person function more “normally”. Most of the language used by the medical community to discuss/describe disability are negatives, suffering from, and afflicted with for example. These words communicate that disability is not something desirable and reflects an attitude of negativity in the way the non-medical community thinks about disability.
The Social Model
The social model sees disability as simply a part of who one is; no different than gender, race, or age. The problem of disability is viewed as one of interaction in a society that is often inaccessible and unaware of the severity of the struggles it presents. The social model seeks to fix these struggles through a change in society, through awareness and accessibility. The language used by the social model is person-centered as opposed to identity-centered, a “person with a disability” vs. a “disabled person” treating the disability as only a part of the whole. These phrases are far less negative.
These are the two major models of disability at play. They are far more complicated than I have related and the advantages and consequences of each warrant much consideration. Many interdisciplinary approaches to these models exist and are not dissimilar to those related to issues of sexual identity and race when it comes to disclosure and discrimination. But the brief descriptions demonstrate incredible differences in the way people think and speak about a disability.
For this paper, I will limit my discussion to that the language used to speak of disability and its impact on the members of the community. It is the language we use that reflects one’s understanding of disability. It is also the language others use that impacts a decision to disclose ones’ identity to the speaker or not. Comfort level and confidence in the speaker’s understanding are paramount. In this cancellation culture, what language does one choose when speaking about disability? How does one speak of disability in a way that communicates comfort and confidence? My research offered some insight into these questions. I was able to locate two papers addressing this issue that struck a note with me.
A lot of controversies exist around the use of the word disability. In #SaytheWord: A Disability Culture Commentary on the Erasure of “Disability” the authors say, “The literature indicates that despite the importance of language on attitudes toward disabled people, attempts to avoid the term ‘disability’ remain and may have unintended consequences.” -Andrews, E. E., Forber-Pratt, A. J., Mona, L. R., Lund, E. M., Pilarski, C. R., & Balter, R. (2019). Some thought by removing the word disability and substituting things like “differently-abled” would remove some of the associated negativity in the same way that person-first language helps to minimize labeling and categorizing people by identity-first. The concern is that the use of euphemisms can serve to reinforce the idea that disability is negative and can be indicative of bias or prejudiced thinking. Such euphemisms, like Photoshop, take something less appealing and make it more acceptable to the viewer; that the viewer may feel more comfortable/more pleased with the subject matter. This reluctance to use the word disabled is more about the needs of the non-disabled who have bias and/or prejudice thinking that underlies their discomfort, and, the disabled who fear being stigmatized; the primary reason reported for not disclosing a disability. Yet many are reclaiming the word disabled. It allows self-identity and serves to place them into a community that can protect against the stigma (and fear of) by “externalizing rather than internalizing disability prejudices.”Andrews, E. E., Forber-Pratt, A. J., Mona, L. R., Lund, E. M., Pilarski, C. R., & Balter, R. (2019).
In “Disclosing Our Relationships to Disabilities: An Invitation for Disability Studies Scholars”, Joan O’TooleCorbet writes, “…we need to examine our reluctance to support public disclosure, open academic inquiries into public signifiers, encourage public disclosure, and use signifiers of one’s relationship to disability.” I found this a fascinating perspective. She writes about how disclosure is managed in the disability rights community. Corbet goes on to say that in this community, they are “expected to locate themselves about the lived disability experience.” One would say, for example, I am disabled, or, I am the parent of a disabled child, or, I am a non-disabled teacher of disabled adults. The reasoning behind this sort of disclosure is that it explains perspectives based on the nature of the relationship to disability that goes beyond the binary disabled or non-disabled identity. It respects that each relationship to disability has valuable information to be shared. Stating a relationship to disability is not the same as sharing specifics of the nature of one’s disability. That remains a personal decision. The rule of thumb is that you may state your relationship to disability but you must not speak to the experience of another as it presumes that you know the lived experience of another and you cannot. This understanding can be applied nicely in the coaching session.
Another positive here is that “Public disclosure of the relationship to disability increases the number of people discussing and identifying disability oppression.” Disclosing one’s relationship to disability provides community membership, support, and strategies to combat ableism. Ableism is to the disability community what white supremacy is to communities of a minority race. Stating one’s relationship to disability opens a space for productive discussion of disability-related issues and helps combat ableism.
In any discussion of oppressed populations, it behooves one to understand the issues at play. I will be focusing the efforts of my transformational coaching practice on serving clients with acquired disabilities. We live in a world demanding political correctness and the cancellation of those who are not. Use of language that, either intentionally or not, communicates negativity towards any group/community and/or culture inhibits trusting relationships and has no place in coaching.
I have chosen to use the word disabled in my marketing/promotional materials. I will use it without the shame and negativity it carries for some. My intent will be clear. I will use it to identify membership within a supportive community. As one with a relatively invisible acquired disability, I know the isolation that comes with not speaking about disability. I want my potential clients to know that they need not feel the isolation that comes with keeping silent and that there is a way to speak of it without the need to disclose one’s diagnosis and specific limitations. That information is disclosed on a need-to-know basis and most simply don’t need to know. I want them to feel welcomed to experience membership in that community, that culture that offers support and advocacy if they so choose.
I will also speak in terms of my relationship to disability because of its ability to communicate differing perspectives on disability. I cannot share my lived experience by sharing a diagnosis. My relationship to disability is relevant to my clients because of its ability to communicate perspectives and open lines of communication on the subject of disability. Since I have identified people with an acquired disability and those with a similar relationship, it also explains my desire to expand services to family, caregivers, friends, and professionals working with my clients of choice.
I will share my relationship to disability as follows. As a child, I attended a summer camp for developmentally disabled children with my siblings (where my mother worked as a camp nurse). I grew up laughing and playing with children who were different but very much the same as me. I was a friend of disabled children. I worked in schools and residential homes for adults with multiple disabilities. I was non-disabled support professional. My father became disabled due to chronic illness. I was the daughter of a disabled man. I was diagnosed with a disabling condition when my children were young. I am a disabled person. My child has a disabling condition. I am the disabled parent of a disabled adult. I have multiple friends with disabilities. I am a disabled friend of disabled adults. I ended my career as a Disability Claims Specialist at the Social Security Administration (S.S.A.). I conducted in-depth interviews to uncover and document the specific physical, psychological and cognitive phenomenon that results in meeting the legal definition of disability used by S.S.A.This gave me an intimate look into the lived experience of many disabled individuals. I am a disabled individual with intimate knowledge of both my own and the disabling conditions of others.
This communicates so much more than disclosing that I have Multiple Sclerosis. Do you feel the difference? Asking for and providing one’s relationship to disability provides relevant and useable information in discussions of disability. The provision of a diagnosis generally either suppresses conversation due to discomfort with the disclosure or leads to additional (and inappropriate in many situations) questions regarding the personal limitations of the disabled person. I would much rather enable a productive conversation than suppress or encourage inappropriate ones.
I change my thoughts, I change my world. ~ Norman Vincent Peale
We are taught at ICA to, “Be aware of personal strengths and weaknesses when it comes to one’s own Coaching Mindset.” ICF talks of “the criticality of a partnership between coach and client, and the importance of cultural, systemic and contextual awareness.” For these reasons, I undertook this study. My coaching mindset needed nurturing. If I am to be a focused partner with clients, I must feel confident that I have communicated, upfront, what is appropriate for my clients to know; that they can then decide if they want to develop a partnership with me.
Despite my years of work with individuals with disabilities, I needed to look at the bigger picture. My experience was job-related and focused on meeting their needs. More caregiver than a coach. My perspective needed to shift. I needed to understand how to speak of disability in a non-directive way. More importantly, I needed to understand how the language I use communicates my thoughts, values, and beliefs. I needed to understand the mindsets of others who participate in the discussion of disability. I needed to understand disability at a different level; one that addressed the need for cultural, systemic, and contextual awareness.
The journey has been well worth the time and energy. It is no longer my role to meet the physical and emotional needs of those with whom I work. I know in my heart that they are entitled to self-determination, just as I am, and I will support and empower them to pursue their goals no longer as a caregiver but a coach. I have learned much about the language used to speak of disability. I have also come to understand the intent behind my need to do this research. I have never spent much time thinking about nor identifying myself as a person with a disability. I needed to acknowledge myself as a member of the community and find a way to communicate that membership in a way that felt comfortable. In doing so, I have resolved my questions regarding how to communicate my thoughts, values, and beliefs by the language I will use to speak of disability with my clients and promote my business. First impressions matter and the language we use speaks volumes about who we are and what we value.
Critical Disability Theory. Stanford Encyclopedia of Philosophy. https://stanford.library.sydney.edu.au/archives/win2019/entries/disability-critical/
Disability and Justice. Stanford Encyclopedia of Philosophy. https://plato.stanford.edu/entries/disability-justice/.
Disclosing Our Relationships to Disabilities: An Invitation for Disability Studies Scholars. Corbett Joan O’Toole 1 (disabled) 2 Independent Researcher. https://dsq-sds.org/article/view/3708/3226.
Disability Studies Quarterly.Siebers, Tobin. Disability Theory. Ann Arbor: University of Michigan Press, 2008. Reviewed by Michael Davidson. https://dsq-sds.org/article/view/160/160.
Medical Model of Disability versus Social Model of Disability. Living with Disability and Chronic Pain. https://canbc.org/blog/medical-model-of-disability-versus-social-model-of-disability/.
Disability Studies Quarterly. Un/covering: Making Disability Identity Legible. Heather Dawn Evans. https://dsq-sds.org/article/view/5556/4550.
Andrews, E. E., Forber-Pratt, A. J., Mona, L. R., Lund, E. M., Pilarski, C. R., & Balter, R. (2019). #SaytheWord: A disability culture commentary on the erasure of “disability”. Rehabilitation Psychology, 64(2), 111–118. https://doi.org/10.1037/rep0000258.