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    Hospice Teaches Me Transitions Are Life

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    Transitions happen every day and are a normal part of our lives. Every person must learn to manage transitions, as a natural part of being a human being. Transitions include not just events that we would normally think of as grief-provoking, like losing a job, losing a pet, experiencing houselessness or personal tragedy, or even a serious illness, injury or the end of life.

    Transitions also include any movement in one’s life from one situation to another, some of which bring great joy, like the birth of a child, a new marriage, buying a home, adopting a pet, meeting a friend. However, transitions can lead to emotional or psychological distress, even when the event is anticipated, wanted, and planned.

    As a hospice social worker, transitions often come in the form of preparation for death, the end of life, and grief/loss of the patient whose life is ending, as well as those loved ones left behind. Each day I get to work with those facing these life transitions. How we cope with these changes determines the ultimate key to our happiness and our ability to acclimate and adapt to a changing life and being in touch with “the inner self.”

    It can be tempting to dive into a new job without laying the groundwork for what the new job entails. It can also be tempting to dive under the covers after a hard day at work or an emotional evening with a spouse. It can feel exciting to rearrange your furniture to change things up or to accommodate new needs in your space.

    Without appropriate forethought, however, even these transitions, which seem small and unimportant in the grand scheme of life, can leave us floating and losing tune with our inner need for structure. Having spent over sixteen years working in hospice, you might think I have this down. I don’t! Every transition needs to be thought-out, especially when I am the first line of defense to help patients and their families come to terms with a patients’ mortality; the ultimate reality. Often, we think about these major life transitions.

    “Why am I doing this?” “Why is this happening?” Many people go about their day with little thought to the smaller transitions. I have found that these changes can have huge anxiety-provoking and stressful impacts on our lives. So what can we do? Prepare for transitions we can anticipate and take our time adjusting to the sudden abruptions of daily life. It’s easier to say than to practice, but it is far better to practice than to be taken unaware and be stymied by life’s little curveballs. I’ve spoken about my grandmother before and she would say, “Practice.” Even the Boy Scouts say, “Be prepared.”

    Hospice has taught me to go with the flow, not to fight against the stream of nature, and to be myself. The cliché,’ “When life gives you lemons, make lemonade,” has a great deal of merit. Allowing yourself to feel your innermost thoughts and feelings can be hard but it is vital to have a successful relationship with change. Transitions, while often difficult, cannot be avoided or denied. Resistance is futile. Transitions are life; becoming a new you. Being a hospice social worker has taught me this.

    The poet, Nikki Giovanni says, “A lot of people resist transition and therefore never allow themselves to enjoy who they are. Embrace the change, no matter what it is; once you do, you can learn about the new world you’re in and take advantage of it.”

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    Robert Goble LCSW, ACHP-SW is a medical social worker at an Oregon community hospice where he provides emotional support through regular clinical counseling on anticipatory grief, loss, mental health exacerbation due to a life-limiting diagnosis and in bereavement. Robert began his career in the hospice and palliative care field in 2002 and has provided community education about hospice, palliative care, and the end of life journey to numerous groups. He serves or has served on various committees throughout his career including diversity inclusion, competency, patient policies and procedures, and charting guidelines. In addition to his role as a medical social worker in hospice and palliative care, Robert provides clinical supervision to master level social workers engaged in obtaining their clinical license. Robert is an active member of the Society for Social Work Leadership in Healthcare, the National Association of Social Workers and serves on the Board of the Northwest Association for Death Education and Bereavement Support.

    Disability

    Unpacking the Historical Relationship of Racism and Ableism

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    A key part of anti-racist social work practice is engaging in the art of reflection as we consider the person in the environment. This also involves being aware of the larger social context in which we live and practice. The social context can, for some people, include experiences of racism and ableism. Recently, I wrote about the symbiotic relationship between racism and ableism and why social workers should care about it. Now, I want to take a step back and look at the historical context that leads us to where we are today with the relationship for disabled people of color. Through the consideration of history, we can understand how to better move forward with integrity as anti-racist social work practitioners.

    As the poet Maya Angelou said “History, despite its wrenching pain, cannot be unlived, but if faced with courage, need not be lived again.” So what are the historical roots of this relationship between racism and ableism? Let’s explore.

    Historical Roots of Ableism and Racism

    We began to see the interaction between ableism and racism way back in our nation’s history. Let’s look at four examples to make this relationship clear. During slavery times, slaveowners conjured up the idea of drapetomania, the alleged psychosis that was experienced by runaway slaves which in retrospect was emblematic of the interaction of ableism and racism. This is an example of how race is pathologized to create racism. In other words, people of color were treated in specific oppressive ways in order to create barriers and conditions that resulted in the origination of disability categories. In reflecting on drapetomania, Isabella Kres-Nash points out that “the concept of disability has been used to justify discrimination against other groups by attributing disability to them.” Of drapetomania specifically, Kres-Nash says this is an example of a “disability being created by people in power in order to preserve social order” all of which occurred in a racialized context during slavery.

    Moving into the 19th century, we can point to the popularity of phrenology, a pseudoscientific technique originally developed in the late 1700s which purports to determine an individual’s character and abilities (and therefore, alleged superiority). This could be deduced from the size and shape of various bumps on a person’s head. Phrenology, among other things, was used to justify the practice of slavery, as was depicted in the film Django, Unchained. Although this pseudoscience has long been discredited, this technique is considered a precursor to modern neuropsychology and rears its ugly head once in a while in current-day conversations about the use of technology and facial recognition (which is known to be much less accurate for people of color).

    Scientific Racism

    If we look to more recent times, such as the turn of the 20th century, we can see connections between racism and the ableist Eugenics movement which sought to breed a perfect human race through a form of “scientific racism.” This movement often targeted what were known as “feebleminded” people (now known as intellectually and developmentally disabled people), among others, for sterilization, many of whom were people of color. In his discussion on the treatment of African American and Black “feebleminded” people, historian Gregory Dorr says “African Americans had become the targets of extra-institutional and extra-legal sterilizations, reflective of a more general southern racist view that it was necessary to further protect the white race itself from black folks.” Thus, scientific racism is a prime example of the relationship between racism and ableism.

    An Unusual Island in Maine

    In the early 1900s, what transpired with the inhabitants of Malaga Island in Maine is also emblematic of the relationship between racism and ableism. This small coastal island was a multiracial fishing community originally founded by an ex-slave. While inter-racial marriage was illegal, the community apparently allowed people to live and let live in this regard. It is said that many of the inhabitants of the island were “feebleminded” or intellectually and developmentally disabled, as we would now say. Whether this is accurate is unknown. As the Eugenics movement gained popularity and as the value of Maine’s coastal islands became more clear as potential tourist destinations, state government officials issued an eviction order to all of the Malaga residents – of all races and ethnicities. All residents who had no place to go were to be placed in the Maine School for the Feebleminded, where some were eventually sterilized and lived out the rest of their lives. The price of miscegenation was banishment from a happy community due in large part to ableism and racism.

    An Inextricable Link

    These four historical lessons give us some important context for what we may see in social work practice today. So, to put it all together, when we look at how structural racism works, we see the ways in which it has pathologized Black and Brown bodies for the purpose of keeping the White status quo in place. We can see how a society that benefits from structural racism is simultaneously responsible for facilitating environments that promote the development or highlighting of disability. These historical situations set the foundations for present day scenarios in which racism and ableism interact regularly – in our criminal justice system, in our education system, in our health care system, in our child welfare system and beyond.

    Action Steps

    How can you learn from this history and move on in a positive direction? Your job is to reflect on the ways in which the past plays out in the present day, and to identify the ways in which you can disrupt the powerful relationship between ableism and racism in your social work practice. Here are five steps you can consider taking today as an equity-minded social work practitioner:

    1. Become aware of all of your client’s social identities, think about disability as an identity, not just race.
    2. Use data to identify inequitable processes and outcomes based on both race and disability.
    3. Reflect on the differential consequences of social work practices on people and communities based on race and disability.
    4. Exercise agency to produce equity across racial and disability groups.
    5. View the practice context as a potentially oppressive and marginalizing space and self-monitor interactions with clients/patients/constituents of different racial and disability social identities.
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    Disability

    Sexual Education & Disability: Why it Should Matter to Social Workers

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    What do you get when you mix the taboo nature of discussing sexual intimacy with the social stigma surrounding intellectual and developmental disabilities? The answer: a heck of a lot more problems than you might think. Sexual education in the school setting is already a hot-button issue for non-disabled students. But when students with intellectual and developmental disabilities are introduced into the mix, so too are the ableist stigmas we all hold.

    Taboo-Nature

    I would like to start this piece with a brief exercise one of the health teachers at my high school conducted at the beginning of sex ed. Repeat after me: Penis. Vagina. Penis. Vagina. Why do you think she would make a room of teenagers yell these words in school? Isn’t that inappropriate? If you think it is, you proved my point from earlier. Sexual intimacy and anything loosely related to sex are currently incredibly taboo topics. To help break down the air of discomfort surrounding such topics, that health teacher did something many are afraid to do: she spoke openly and encouraged others to follow suit.

    One could argue these topics are not to be spoken about simply because we are taught to not speak about them. A child can ask why their anatomy is different from their siblings, but they will often be met with shushes or roundabout answers. In many cases, there is no reason for this reaction other than traditional values. Those same values are often times what causes conflict in regard to sexual education in public schools.

    My sex ed experience at a public school was mediocre at best. Genitalia, STIs, and contraceptive methods were discussed. Consent was not taught nor were the proper ways to actually engage in sex, just that if we did it we should do it safely. This was not the most educational experience. And if this is what I received, what is the experience of children and adolescents with intellectual and developmental disabilities?

    The Institutional Deficit

    Working in a behavioral school for boys with emotional, developmental, and intellectual disabilities yields an interesting perspective. These students are taught the same subjects most other students in the country are taught just with more academic and therapeutic support. However, they are not always provided with a health class.

    I worry greatly about this institutional deficit, partly due to my own ableism. These students are receiving very little, if any, sexual education during the school year from our faculty and who knows what they see on the Internet and what their families and friends are telling them. As they get older and begin to develop their curiosity, I am worried that they might not always have a reliable source of sexual education. With that, the concept of consent is often discussed but not in the context of intimacy. I don’t know if the connection between consent and sexual activities has been made or if it ever will be in this school setting. I don’t know if some of these students would understand the magnitude of these topics. I’d like to think these kids can do anything, but from what I’ve seen I don’t know if I would feel confident in their understanding. I wish I could feel otherwise.

    Deeper Issues

    Individuals with an intellectual or developmental disability are seven times more likely to experience sexual assault than non-disabled people. In many cases, the perpetrator is another individual with an intellectual or developmental disability. Ableism likely prevents people from thinking this to be possible. Common stereotypes around this population convince the non-disabled community that these individuals can do no wrong and are by default sweet and innocent. Of course, this is not realistic. Another ableist stereotype, as seen above, is the incapability of this population to understand topics related to sexual education and sexual intimacy. Like the non-disabled community, however, individuals with an intellectual or developmental disability prove that idea wrong.

    Why This Matters to Social Workers

    So, if people with intellectual and developmental disabilities are able to learn about sexual education, and learning about sexual education dramatically decreases instances of sexual assault, then what is the reason for this population to not receive sexual education? The signs point towards ableism held by those in helping professions, with social workers being a perfect example. While the social work community prides itself on how educated and accepting they are of different identities, very rarely do social workers take the time to reflect upon identities they may not be as familiar with. Race and sexual orientation are examples of identities social workers study extensively, but disability as an identity and the depths of disability culture are rarely examined. To combat this, social workers need to begin the process of confronting personal ableism.

    Confronting personal ableism is difficult, but doing so will only benefit social workers and others who choose to do so. It is important and necessary to challenge internal biases. Critically examining personal ableist ideas pushes social workers to gain a different perspective. Through this difficult process, one gains clarity in the issues they may not even know they wrestle with. Understanding how ableism impacts perceptions allows social workers to get a firm grasp on the disability community. They may begin to feel empowered to advocate for a change they never once considered, such as a stronger sexual education program for people with an intellectual or developmental disability. The importance of critically examining personal biases should be emphasized throughout the entirety of the social work community and by every social worker.

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    Disability

    Case Study: Reasonable Accommodation in Social Work

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    The social work field is often full of situations that are not straight forward. On a Reddit social media post, a social worker reached out to the social work community for advice on a particularly unclear situation. The social worker runs a solo, private practice in a small town, and recently had a request from one of her clients that she is struggling to navigate. This client has hearing loss and would like to communicate with American Sign Language in therapy sessions moving forward. The social worker identified a potential option for interpreting services, but it comes at a high cost. She knows it is her responsibility to pay for the interpreting service, even though it will cost more than the payment she receives for the sessions. Despite this, she is trying to figure out the best way to serve her client.

    Since her private practice consists solely of her, she does not have coworkers to consult with. She also does not have an agency resource that is already in place. Additionally, there are few options for interpreting services in her small town. She poses a few questions to the reddit community, aimed at gaining a better understanding to serve her client. Responses suggested she try video interpreting services, which can often be a cheaper alternative. In considering the accommodations a social worker should provide, consulting the Americans with Disabilities Act (ADA) is especially useful. Under the effective communication section, it’s outlined that the interpreter service must be provided unless it causes undue financial burden. In a situation where this does happen, the provider must find a suitable alternative. In this instance, an in-person interpreter might cause undue burden, but a video interpreter might not.

    This social worker is being reactive to the needs of this client, and proactive with the needs of future clients. She shared her idea to set aside a specific amount of money each year for interpreting or similar services. She also asked the reddit community if there were any other issues she should be looking at in this scenario. This shows a social worker who is committed to her clients and has their well-being and best interests in mind. With that being said, lets review the National Association of Social Workers Code of Ethics and the Americans with Disabilities Act to better understand how they specifically apply to this scenario.

    The Code of Ethics

    Social workers have an ethical and legal obligation to provide adequate services for their clients. This social worker is trying do to the right thing for her client by following the ADA and the National Association of Social Workers Code of Ethics. In the NASW Code of Ethics, the first standard is the Social Workers’ Ethical Responsibilities to Clients. Within that standard, the first section outlines a social worker’s commitment to their clients. This means that a social worker’s actions should always be in the best interest of the client. There may be instances in which the social worker has to adhere to certain laws or rules that go against what the client wants, but this is necessary in limited circumstances.

    Americans with Disabilities

    In the United States, approximately 15% of adults experience some form of difficulty with hearing. Providing therapy to a Deaf or hard of hearing individual comes with unique circumstances for practitioners. Oftentimes, Deaf or hard of hearing individuals do not experience accurate assessment or diagnostic information due to these circumstances and the shortcomings of practitioners. The NASW has put together a briefing regarding the obligations social workers have when working with individuals who are Deaf or have hearing loss. When working with clients with any type of disability, social workers must provide services that are appropriate and serve the best interests of their clients.

    Approximately 1 in 4 Americans are living with some type of disability. The most common types of disabilities are those relating to mobility, cognition, independent living, hearing, vision, and self-care. Any type of disability may mean that an individual needs accommodations in a therapy setting. One of the first steps in providing adequate care for someone with a disability is to understand what barriers are in place for that person. Awareness and education are key elements to providing competent and adequate services for an individual.

    Wrapping it Up

    A social worker’s role is to act in the best interest of their clients whenever possible. This includes individual therapy sessions, as well as ensuring that future clients receive adequate treatment. Outside of individual therapy sessions, social workers often wear many hats. Social workers are strong advocates, initiators of change, and fierce activists. These are all important roles for social workers to bear when upholding their commitment to clients. Social workers often go above and beyond for their clients, and this is especially evident in cases like the one above.

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