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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.

    Culture

    What “Bachelor in Paradise” Can Teach us About Empowering the Disability Community

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    Are you a fan of “Bachelor in Paradise?” Whether you realize it or not, this season of the “Bachelor” franchise spinoff took on the topic of disability empowerment. Which is not exactly an expected topic for mainstream television. For years, the “Bachelor” series has been criticized for featuring primarily White contestants, and has worked to diversify the races and ethnicities of the people they draw on the show. But what about people from the disability community or people who identify as Deaf or hard-of-hearing?

    Being disabled or Deaf or hard of hearing are also social identities in American culture – identities that should not be overlooked in the show’s representation. These communities represent what some refer to as the largest minority community in the United States at 26 percent of the U.S. population according to the Centers for Disease Control and Prevention. In the following, we’ll discuss more about why this year’s “Bachelor in Paradise” was so significant and what that may mean for social workers.

    Introducing Abigail

    A few years ago, we did have Sarah Herron on the show, a woman with a physical disability, although her presence was short-lived. But this season, the very first person down the stairs to the Mexican beachfront hacienda was Abigail Heringer, a 26 year-old woman who identifies as Deaf due to congenital hearing loss from birth. She received cochlear implants at the age of two but does consider herself disabled due to her hearing impairment and loss. Abigail was a central figure in this summer’s Bachelor in Paradise due to her romance with Noah Erb.

    It was refreshing to see a disabled person in a romantic relationship given the history our culture has of thinking that disabled folks are asexual, incapable of having sex or in need of being protected from any kind of sexual contact. Abigail and Noah’s relationship has played out on television screens across Bachelor Nation – from their devastating breakup at the show’s conclusion to their rekindled romance announced subtly on social media later. This demonstrates that members of the disability community have relationships too, and that this is 100% normative behavior, with breakups, glitches, awkwardness, kissing and all!

    The Dignity of Risk

    So how does this relate to social work practice? One of the central tenets of good disability social work is how we need to honor the concept of the dignity of risk. This is the idea that everyone can learn from everyday risks. Central to honoring the dignity of risk is respecting an individual’s autonomy and self-determination to make choices. Also important, is the right for our clients to make choices even if social workers or other professionals in the person’s life feel that they could endanger the decision-maker in question. In order to respect a person’s dignity of risk, one should provide intermittent support even if others do not approve of the choice.

    As there is inherent dignity in the experience of everyday risk, this concept suggests that limiting a disabled person’s ability to make even a risky choice, or limiting their access to the learning that comes along with a potentially emotionally painful risk, such as dating, does not foster overall wellness in the long run. Abigail, from this year’s “Bachelor in Paradise” is a wonderful example of the kind of empowerment needed, rather than sheltering one from risks in life.

    Robert Perske famously wrote:

    “Overprotection may appear on the surface to be kind, but it can be really evil. An oversupply can smother people emotionally, squeeze the life out of their hopes and expectations, and strip them of their dignity. Overprotection can keep people from becoming all they could become…”

    Arguably, the dignity of risk may be among the most challenging tenets for social workers to embrace in their practice, but it is vital to accept given its intersection with self-determination. The dignity of risk also involves learning about the part of life that involves sexual and romantic relationships. Social workers need to remember to talk to their clients about sexuality in a developmentally appropriate manner. It is important not to cut off conversations about this topic, or to skirt the subject when it comes up. We must also support our clients in exploring how to engage in healthy relationships when they have the opportunities to be in them.

    It’s wonderful that Abigail Heringer can be a model in reminding us of this important lesson for empowerment-oriented disability social work. One that embraces the dignity of risk for those who wish to date! With that being said, here’s to Noah and Abigail’s relationship!

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    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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