AIM to Be Inclusive
by Reverend Helen Murgida
Good morning and Welcome! If you are new to the First Religious Society, we are so glad that you have joined us. My name is Rev. Helen Murgida and I serve as Affiliate Minister and Pastoral Care Associate. I am a life-long educator and administrator in the field of special education and currently work as a consultant for the Massachusetts Department of Elementary and Secondary Education, in the Office of Approved Special Education Schools, or OASES. My work in the field of special education has impacted my spiritual calling at FRS regarding the accessibility and inclusion status of all members of our beloved congregation including those people with visible and invisible disabilities.
The beautiful illustration on the cover of the Order of Service is by Dadu Shin, a Boston native and graduate of the Rhode Island School of Design. He was commissioned by The New York Times to visually represent the 61 essays that they published during the 2016 Paralympics in Rio de Janeiro. The essays, all by people with disabilities, are honest, powerful, and authentic opinions from insiders’ perspectives.
This illustration accompanied the first essay in the series entitled Becoming Disabled by Rosemarie Garland-Thompson, a Professor of English and Bioethics at Emory University who was born with a congenital malformation of her arms. She describes the complexity of defining disability, and the recognition that many people move in and out of a disability at some point in their lifetime. She says, “Understanding how disability functions along with other systems or representation clarifies how all the systems intersect and mutually constitute one another. Without a disability consciousness I was in the closet…I have learned to be disabled. What has transformed is not my body, but my consciousness. As we manage our bodies in environments not built for them, the social barriers can sometimes be more awkward than the physical ones.” Her environment defined her as disabled.
The essays have been published in the book About Us: Essays from the Disability Series of the NY Times by Peter Catapano and Garland-Thomson. I highly recommend it. Catapano reminds us that the “Us” in the title of the book is no fringe population – it is estimated that one in five Americans, about 60 million people, are living with a disability. This number includes those affected by age, injury, mental or physical illness, or other life circumstances. Are you currently part of the one in five? Have you been? Will you be?
What is “disability”? Emily Landau states the definition simply and concisely: “Disability: a state of being; a natural part of the human experience.”
Landau describes herself as having Larsen syndrome, a joint and muscle disability that she inherited from her mother, hearing disabilities, and mental health disabilities. She wrote a wonderful book, Demystifying Disability: What to Know, What to Say, and How to Be an Ally. I remember her from her days many years ago when she appeared on Sesame Street. She was the little girl who used a wheelchair. From an insider’s perspective she has sound advice:
Stop using the word “handicapped” – use “disabled.” Avoid euphemisms such as “physically challenged,” “special needs,” “differently abled,” “handi-capable,” “mentally or physically challenged,” and “twice exceptional.” I work for the Office of Approved Special Education I predict that there will be a name change in the near future!
She tells us to avoid the following terms, which are hard for me to say and hard for you to hear: insane, crazy, dumb, stupid, imbecile, lame, moron, slow, stupid, and the outright slurs: retarded, midget, cripple, gimp, spaz, mad, and crazy. From my experience, I have learned that sometimes people with disabilities will use these terms amongst themselves – that’s their prerogative.
A few weeks ago, I was doing an inspection of a program that serves students with autism and significant behavioral issues. Their new basketball court was in a bowl with a very steep side leading up to a highway. It was still under construction, and I asked about fencing, saying, “These kids are crazy – they would climb that slope and go on the highway to retrieve the ball in a heart-beat!” As soon as “crazy” came out of my mouth, I apologized and said I should never use the word “crazy.” One of the administrators kindly made excuses for me. He said “Oh, people our age have a hard time remembering not to use such words.” No, age is never an excuse!
Emily also has a lot to share about Ableism which she defines: “Ableism is attitudes, actions, and circumstances that devalue people because they are disabled or perceived as having a disability.”
She tells us that people with disabilities, including herself, may be thought of as complainers, or as bitter people. Physical inaccessibility takes a huge emotional toll on people. People with physical disabilities experience multiple risk factors for depressive symptoms. Many ableists can only accommodate disability if it’s clearly visible, so when someone doesn’t meet that expectation of disability, they’re dismissed. For people who have multiple identifiers, this will be compounded by the ways we navigate both ableism, racism, misogyny, homophobia, and transphobia.
Forty years ago, a group of people in wheelchairs rolled up to a sidewalk curb in Berkeley, CA and poured cement at the curb. They were only threatened with arrest. Today we witness the “curb cut effect” which states that when you design for disabilities, you make things better for everyone in the process. Curb cuts on sidewalks make it easier for people pushing strollers, the elderly with walkers, those rolling a bag behind them, and those just carefully watching our steps, such as me. We all use them.
Lastly, Emily cautions about other forms of hurtful language. She tells us, never say “wheelchair person,” say “wheelchair user.” The disabled are not “confined to a wheelchair,” or “wheelchair bound.” This is tricky as we sometimes use PFL or person-first language: “a person who has Down syndrome,” “a child with cerebral palsy.” But we also use IFL or identity-first language: “Autistic people” (this is commonly preferred by the Autistic community), “disabled person,” “bipolar person,” or “dyslexic person” …but we don’t use “Down Syndrome person,” or muscular dystrophy person.” The bottom line is that it is up to the person with the disability to state their preferences, and the comfort level for them to do so only comes when they are part of a safe and open community.
Let’s examine Microaggression – a very popular buzz word.
“Microaggression is a term used for commonplace daily verbal, behavioral, or environmental slights, whether intentional or unintentional, that communicate hostile, derogatory, or negative attitudes toward stigmatized or culturally marginalized groups.”
The term “microaggression” was coined in the 1970s by Dr. Chester Pierce, a psychiatrist and tenured professor of psychiatry and education at Harvard Medical School, to describe insults and dismissals, which he regularly witnessed and experienced, by non-black Americans toward African Americans. The concept then spread to inequities in the workplace. For the past 10-15 years, the use of the term has expanded in application to the casual degradation of any socially marginalized group, including LGBTQIA+ people, people living in poverty, and people who are disabled.
I learned about racial microaggressions at work. We were instructed by Administration to participate in small peer-led, self-identified segregated groups of 12 around this topic. The groups were: 1) Black, American-born Afro-Americans, 2) Black people born in Africa and the Caribbean, 3) White people, both foreign-born and American-born, and 4) Asian Groups.
In structured workshops, we individually identified our own personal microaggressions and those we recognized as committed by others. For the first couple of sessions, I struggled because I believed that I am not a microaggressor, never have been, never will be – that was my perspective. We were gently challenged to unlock and recognize our own complicities. We developed a set of expectations to enhance self-awareness and a sense of responsibility for all of us to prevent and respond to microaggressions from four positions: that of the target, the microaggressor, the witness, or the confidante. It was a humbling learning experience.
Our next step, random assignment, in mixed racial groups, is proving to be challenging. It will take a few more months of meetings and planning before we are able to do so.
So that’s my immersion in exploring the tip of the iceberg about the pain caused by microaggressions. Every session had me extrapolating from race at the workplace to microaggressions against people with disabilities as they occur here at FRS. Let’s consider how microaggressions against people with disabilities might look at FRS.
I used the work of Erin Migdol, an author and blogger who identifies as having hidden disabilities and chronic pain, as a guide. Erin identifies four microaggressions that disabled people are tired of hearing and experiencing: Helplessness, Minimization, Denial of Personhood, and Otherization.
Helplessness: Erin tells us that Helplessness is when people with disabilities are treated as incapable – useless, broken, and unable to do any tasks without help. This is harsh, and it is easy for one to believe, “not me, I don’t think that way.” Personally, I fell into this category of microaggression in a convoluted way with my late husband Frank years ago by not insisting that we work out something here at FRS to help him access the stairs to the choir loft or some other accommodation. Those of you who knew Frank knew that he loved all forms of music and loved singing in the bass section. He was a proud, take-charge person, opinionated, stubborn, very knowledgeable, helpful, and personable. I acquiesced to him viewing himself as “helpless.” Helplessness is a personal perception as well as a community perception.
Reyma McCoy McDeid, an Autistic activist, dropped a hard-hitting question: “If you do not belong to a particular marginalized community and want to help that community, why do you associate the word “help” with that community? That really needs to be unpacked before you approach that community.”
Helplessness and Needing Help are two overriding stereotypes associated with disability. She believes the first step in becoming an ally to people with disabilities is unlearning the misconceptions and recognizing that disabled people are not in need of saving. She says “To be an Ally is to help people who are marginalized in some capacity to make the most of their life in this unchanged system. To be an Accomplice is to work side by side with people who are marginalized, to confront the system, and contribute to shifting it accordingly.” Accomplice – what a great descriptor!
Our magnificent Church and Parish Hall are historical treasures. We have done wonderful things to decrease people’s dependence on others. We have created a space that people who use wheelchairs can access. We have a side entrance that is accessible by wheelchair, a lift to the lower level, accessible bathrooms, a hearing loop system, enlarged print available, YouTube for those unable to attend in person, and Zoom to allow for attendance at meetings. We have come a long way. Yet, we recognize that parts of the main Church and Parish Hall remain inaccessible, which fosters helplessness.
Minimization: Minimization is when neurotypicals feel that disabled people are “overstating” their needs: “Well, we do have a loop system, so our hearing needs are all addressed.” “Why are they using that wheelchair? I’ve seen them walking with a cane.” “Why would a strong young man like that need a service dog?” “Her husband has been dead for two years; she should be over it by now.” Minimization is the belief that somehow disability is a choice. When you realize that you are magnifying a situation, pause and reassess. The same is true for minimizing positive situations – stop, breathe, and reframe the situation. Doing this can have the power to uplift, encourage, inspire, and even heal. Use your thoughts and words to inflate others rather than deflate them.
Denial of Personhood: This is the assumption that a physical disability indicates decreased mental capacity. Or if a person has an intellectual disability, they are incompetent. You can witness this in the tone of voice; it sounds like someone is speaking to a child. It is also seen when a person with a disability is accompanied by a friend, and the friend is addressed and expected to reply for the disabled person. I attend meetings in schools that teach children who are deaf. One school in particular only communicates with sign language. It takes a very conscious effort to focus on the person signing rather than the interpreter, especially in large meetings with several participants signing.
Otherization: Otherization is a word originally coined by the neuroscientist Kathleen Turner describing the way in which individuals or groups may be perceived as different and separate. People with disabilities are treated as “abnormal, an oddity, or nonhuman,” which leads to microaggressions like staring. This reinforces the idea that people with disabilities are different and therefore somehow don’t deserve equal access to life experiences. I think that the only viable solution to the problem of “othering” is one involving inclusion and belongingness. The most important good we can contribute to each other in society is membership in community. This is not the old concept of “charity.” This is empowering people.
Our beloved FRS community worked hard to craft our powerful Values, Mission, and Ends. Today we are living into commitment to our Value of Authentic Connection, our Mission of “Come as You Are”, and our End “Welcome people in all their diversity and create belonging for one another.” We are a community deeply dedicated to social justice action causes. I believe we are working toward becoming an even more accessible church and that we are being called to expand our “to do” list.
I am indebted to disability activists Bill LaPorte-Bryan, Howard Mandeville, and Julia O’Leary, who have joined with me over the last year as an ad hoc committee to address disability awareness, accessibility, and inclusion at FRS. Bill’s sharing this morning was inspirational. How fortunate we are to have him at FRS via remote Zoom connection from Hartford.
We are a small group that needs to grow. As Bill told us, AIM or Accessibility Inclusion Ministry is a certification program created by EqUUAL Access in partnership with the UUA. AIM’s purpose is to guide congregations to better welcome, embrace, integrate, and support people with disabilities and their families in our communities. The intent of the program is to meet each congregation where it is and move forward at a reasonable pace based on its resources, needs, and abilities over a several year period. It is a gradual and ongoing process.
Rev. Rebecca enthusiastically supports the process of working to achieve AIM Certification. Our next step is to define our specific FRS needs and goals through a survey and to form a committee that must include people with both visible and invisible disabilities as well as neurotypicals serving as accomplices. I hope you are able to join with us! Thank you for being my beloved community!