Preparing for Hurricane Irma: What social workers need to know about people with disabilities

Images of disability symbols
Remember the spectrum of disabilities as you prepare for Hurricane Irma (Image credit: The Feminist Wire)

The state of Florida has called for 17,000 volunteers to help out with the post-Irma recovery process, but there’s one population that are often forgotten in the crush of storm evacuation and disaster recovery efforts, and that is people with disabilities. Recently, at a social work conference, I was told “disability is not a social work issue,” which is a shocking statement, given that over one-fifth of the United States’ population has a disability according to the Centers for Disease Control. All too often, people with disabilities are left feeling invisible in our society – and as helping professionals, we need to right this wrong. In order to begin to do this work, especially given the impact of Hurricanes Irma and Harvey on our country, here are two things helping professionals need to know about people with disabilities.

Storms such as Irma and Harvey are very likely to have a disproportionate impact on people with disabilities – see Professor Rabia Belt’s commentary here. During Hurricane Katrina and surely many others, it came to light that many people with disabilities were unable to evacuate due to mobility limitations, equipment needs, staffing needs, requirements for service animals or just having a low income. We know that people with disabilities are much more likely to live in poverty in this country, and this can really take a toll during storm evacuations and disaster recovery. In fact, during Katrina, 155,000 people with disabilities aged 5 and up lived in the cities hardest hit by the storm – and unfortunately, a disproportionate amount of Katrina’s fatalities involved this population. Helping professionals need to see people with disabilities – and seek them out prior to, during and after a storm.

Given these realities, it is important to design disaster preparedness and recovery efforts so that they are accessible to all – including people with disabilities in keeping with the Americans with Disabilities Act. In the disability community, stories about people with mobility limitations, nursing needs and service animals being refused shelter or assistance are making the rounds. We must do better. The National Council on Disability wrote an extensive report on the topic of disaster preparedness, and it provides great guidance for disaster planning and recovery efforts – be prepared! There is also specialized guidance on how to create accessible programs and spaces for people with disabilities during and after a devastating storm in a way that promotes self-determination. People with disabilities do not want to be victims, and helping professionals should support their self-determination during evacuations, sheltering and recovery. Portlight Inclusive Disaster Strategies, an organization based in the southern United States, is the go-to source for assistance with people with disabilities during these storms. Please use their hotline for assistance with your clients with disabilities 1-800-626-4959. Their motto is drawn from the disability civil rights movement, “nothing about us without us.” As you gear up to provide help before, during and after these storms, keep this motto in mind and let it guide your practice. We can do better for people with disabilities, and we will.

Why social workers shouldn’t be “servicing” the people they work with

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Let’s reconsider how we refer to the people we work with in our social work practice, it’s a question of respect. (Image credit: http://www.handsofrespect.com)

Debates about how to refer to the people social workers support through the provision of care and service referrals ebbs and flows. We have moved on from the medicalized “patient” to the more neutral “client.”  Some critique the “client” moniker, and have embraced a more business-like approach in the use of the term “consumer.” Some critique that approach as well given our society’s shift into a heavily consumer-oriented culture. While we may all just want to consider talking about the “people” we work with, one thing we should all give a second thought to is the use of the term “servicing” when referring to what it is we do as social workers.

Let me give you an example from an interaction I had with a student in class. She is my best student, but when she spoke about the people she worked with, she said “I worked as an Early Head Start Home Visitor and serviced prenatal clients as well as children under 3 years old.” In and around my classrooms, I can’t seem to escape social workers in training who are “servicing” their clients, especially those in the child welfare sector. Yes, we provide services, and we are service providers, but we should not be “servicing” people.

Inanimate objects, such as automobiles are serviced, or perhaps computer networks, but not the people we work with. By referring to the people we work with as being “serviceable,” I argue that we are inhibiting their agency – or their capacity to acting or exert power. Social workers are tasked – very clearly – with working towards social justice both for and with the people they work with. This is made clear in the profession’s Code of Ethics, which encourages us to partner with the people we work with. Given this, there is no room for drive-through “servicing,” a term that is way too provider-centric.

Finally, not only is the term “servicing” disempowering, it is also disrespectful. Many social workers that support people working in the sex industry report that the term “servicing” is used to refer to the provision of sexual services to a paying client in that industry. Political correctness should not factor in here, because words do matter in building rapport with people – and in respecting them. Please consider taking the time to reflect on how it is you refer to the people you work with!

Why I love Gimpgirl.com: How Disability culture can inform mentoring girls with disabilities

BSAGB_full_logo_color_NEWI am a social work intern at the Big Sister Association of Boston. This is a unique organization, as it is the only gender-specific branch of Big Brother Big Sister in the United States. This is an important fact as research suggests that girls experience mentoring relationships differently than boys do. Additionally, research suggests that girls have gender-specific needs that can best be addressed by gender-sensitive support. One of the values of the Big Sister Association of Boston is cultural responsiveness, as the agency finds it important to learn about and embrace cultural differences – and this is where Disability culture comes in.

Disability social workers Romel Mackelprang and Richard Salsgiver discuss the emergence of Disability culture and assert that it is not only an identity but a ‘way of life,’ similar to race or ethnicity. I feel that it is critical that when conceptualizing how to be cultural responsive that Big Sister mentors keep Disability in mind as a type of culture. Recognizing Disability culture is important because we work with Little Sisters ages seven through twenty, as well as volunteer Big Sisters over the age of eighteen, and any of these girls and women may have a disability.

In addition to being aware of the language and history of Disability culture in order to show respect, we must also understand that there is a community aspect of Disability culture that can have great social benefits for the people we work with. The goal of our mentoring program is to strategically match girls with mentors who have similar interests and experiences as them. Therefore, making an effort to match girls and mentors with disabilities can have the added benefit of sharing an understanding of a common experience and culture, therefore making the match relationship even more impactful.

In their book, Romel Mackelprang and Richard Salsgiver share the story of Carolyn and Marnie, two women who met and “developed a sisterhood formed from shared circumstances….their self-concepts and meanings they ascribed to their disabilities were similar.” Further, the authors note that Carloyn and Marnie had “few or no role models with disabilities, their disabilities were defined as negative, shameful…were isolated from others like themselves.”

The concepts of sisterhood and community are two more of the Big Sister Association of Boston’s values, and increased confidence is an outcome goal held by the program. As the relationship between women can be so powerful, it is important that Big Sister staff recognize this potential and thoughtfully seek to make matches between women and girls who share experiences as people with disabilities. Big Sister Association of Boston values gender-specific programming, and it is important that this specificity carries over when thinking even further about what it means to not only be a girl, but to the intersection of being a girl with a disability in our society.

One way that Big Sister staff can work on developing knowledge about Disability culture as it relates to girls could be perusing the Gimp Girl website. As a refresher, the Georgetown Health Policy Institute defines cultural competence as “the ability of providers and organizations to effectively deliver health care services that meet the social, cultural, and linguistic needs of patients.” The Gimp Girl website can be used as a resource for Big Sister staff to assist them in the task of continuously working on their cultural competence by becoming fully informed about the views and needs of girls with disabilities in particular. As a non-disabled person, I have permission to access articles and presentations on the site and join their online public forums. The website also includes links to many blogs written by and for girls with disabilities, which can raise awareness of the most current issues and interests of this particular community.

Tuning in to Gimp Girl can help me practice cultural responsiveness by making me aware of the issues and concerns of interest to this population in order to most effectively meet the needs of girls with disabilities in a respectful and accessible way. Realizing that some people might prefer the term ‘gimp’ to the term ‘disabled’ might be important for Big Sister staff to realize vis-à-vis the debate between whether to use person first or disability first language. The website will also help staff to practice cultural humility by reminding them that girls with disabilities have distinct and individual needs, as they describe what it means to experience the intersection of gender identity and disability. Reading about girls’ varying experiences will encourage Big Sister staff to consistently check their own biases and assumptions as well as maintain their position as learners when interacting with girls.

In addition to increasing any given Big Sister staffmembers’ knowledge and awareness about Disability culture, staff will also be able to share this website with Little Sisters if they are not familiar with it. Our agency constantly provides Big Sisters with information, resources, and activities they can use when spending time with their ‘Littles,’ and this website could be a great resource. Big Sisters could explore the website with their Littles to find blogs that their Littles can relate to, or even help Littles join a Support Meeting in the online chat room. I think this resource is something that can benefit all of our staff and the girls and women we serve – and perhaps this will be true for you as well!

Erica Chepulis is a candidate for the degree of Masters in Social Work at Salem State University’s School of Social Work. She holds a B.A. in Social Work from Wheelock College. She hopes to continue her career in working with youth in programs that support their educational, social, and emotional growth and encourage them to reach their full potential. Ms. Chepulis chose to study social work practice with people with disabilities to learn how to most effectively and respectfully advocate for youth with disabilities and their families. Ms. Chepulis can be reached at e_chepulis@salemstate.edu. This article reflects the opinions of Ms. Chepulis, and not the Big Sister Association of Greater Boston.

 

Taking out the trash: How my client with a disability got me to recognize my own ableism

Cartoon image of a trash can with a variety of trash and garbage in and around it
It took her noticing that her client was capable of doing everyday tasks (like taking out the trash) for her to recognized her own ableism,

While studying how to be a social worker in practice with people with disabilities, I have learned that it is important to consider my own ableism. When I sat down and thought about it, I have engaged in ableism by practicing what Mackleprang and Salsgiver (2015) call compartmentalization. When I worked at a local organization for people with disabilities, I worked with a female diagnosed with Rett Syndrome. She was unable to walk or talk and was not expected to live a long or fulfilling life. At the time, I pitied this woman because she was such a sweet and caring person. As a result, I wanted her to be able to have a life where she could walk and talk. As Mackleprang and Salsgiver (2015) describe, I incorporated the medical model of disability into my work and started treating her like a child. I did not allow her to be independent even though she was capable of doing so. She had learned to function with her disability and I was ignoring this and not allowing her to live as normal of a life as she could have. She had learned to use her own form of sign language and was learning independent skills and yet I was doing everything for her.

Luckily, I was working with someone who had worked with this woman for over one year and she was able to point out my mistakes. For example, my coworker showed me that this woman could load and unload the dishwasher, set the table and take out the trash. Over time, I also learned how to interpret my client’s form of sign language. Admittedly, I was not perfect and I engaged in ableism with this woman from time to time. There was one time where I actually put this woman in a childlike state again and spoke for her, as I assumed the parental role and thought I knew what was best. At that point we had a formed a relationship so she was able to sign to me to allow her to speak. Learning to truly listen to our clients through our own ableism is an important skill to master.

In retrospect, I am thankful for the process of learning that allowed me to not engage in ableism with this woman. I am also thankful that she did not allow the stereotype that I placed on her to control how she was already functioning. She was patient with me and continued asserting her independence. This woman was strong enough to not allow me or any other person to determine how she was going to be labeled. By working with this woman, I was able to learn how to recognize when I am engaging in ableism. She has made me a better social worker.

As a social worker practitioner, it is important to consider one’s own ableism so one does not stereotype against the clients they are working with. When you are able to recognize your ableism, you will be able to actively work on not exerting your ableism on others. This also helps form a positive worker-client relationship. If you are open and honest about your ableism it will help the client be more comfortable with you and help them teach you about their disability.

Kasey A Soucy
This is Kasey A Soucy, an MSW candidate at Salem State University’s School of Social Work. (Image shows a confident White woman in a beige sweater who is smiling and standing in front of a forest)

Kasey Soucy is a candidate for the degree of Masters in Social Work at Salem State University’s School of Social Work. She holds a B.A. in Psychology from Salem State University. She hopes to continue her career with the Department of Children and Families. Ms. Soucy chose to study social work practice with people with disabilities so she can have a better understanding with the clients she works with. She also wants to work with her agency in providing a more inclusive solution for working with people with disabilities. Ms. Soucy can be reached at k_soucy@salemstate.edu or on Twitter at @disabilitysw.

My sons, my ableism, my social work practice: Lessons learned

Social workers are deeply influenced by their home life. In order to be a reflective practitioner, I feel it is vital to take a look at myself and how my home life influences my social work practice. As part of my course on social work practice with people with disabilities, I was asked to consider my own ableism. I am sad to admit that within my own personal life, I have engaged in ableism. Ableism is defined by Mackelprang and Salsgiver (2015) as “the belief that because persons with disabilities are not typical of the non-disabled majority, they are inferior” (Mackelprang & Salsgiver, 2015, p.105).  Upon reflection, I realize that I tend to engage in ableism when I protect my children from the harsh realities of the world, even though I am not. For example, I tend to think that because my son has Autism, or that my other son has an intellectual disability, that they may not be able to handle life’s challenges.  Actually, they are quite competent in handling many situations without my added help or support.

I realize that I tend to view my children and other people with disabilities with a ‘containment’ lens.  Namely, I always feel that I am limiting the choices of those with a disability be it about going to a party, or getting part time employment.  I tend to not let my child with intellectual disabilities go to the mall with his friends, fearing that he might not pay for an item, or might get treated unfairly by a store employee if he doesn’t understand a price.  I also view my son with Autism as a child for whom college is not an option.  Honestly, I don’t know why I make these assumptions.  I now understand that they are wrong, and I am actively working on ending my ‘containment’ mothering approach. I’m now striving to provide equal opportunities to each of my children, and hoping to push them towards their highest potential.

Ableism is closely linked to the lens of the medical model of disability in which the impairment is seen as the problem, versus the social environment. Sometimes, for example, I see my children through this lens, and that is unfair to their development and self-esteem.  Specifically, when any family member hears that there is something ‘wrong’ with my child, the first thought that comes into my head relates to how I am going to ‘fix’ the problem.  In these moments, I am reacting in fear – of the unknown and of the future. Lately, I have gotten farther away from the medical model and ableist views. Realizing my children, and that other people living with disabilities are great the way they are, and don’t need to be fixed, is a very freeing feeling. I no longer feel as if I am on a race to the finish, but rather on a journey of discovery.

Learning about the social model of disability has also helped me to reflect on my own ableism. I love the work of disability studies scholar Tom Shakespeare, who describes the challenges of an overly-medicalized view of people with disabilities. He defines disability as “the disadvantage or restriction of activity caused by a contemporary social organization which takes little or no account of people who have physical impairments and thus excludes them from participation in the mainstream social activities” (Shakespeare, 2002, p. 124).  This social model thinking can also be applied to how I view my children.  I am quick to blame the schools, for not helping my sons gain their skills, and educational needs fast enough.  I am quick to point out that they do not have the best equipment or the resources to help my children be fully integrated into regular classes.

This social model of thinking about disability has its downside, though.  Shakespeare notes that the world cannot be a barrier free environment and that it isn’t possible to have a barrier free world for everyone.  In this vein, I engaged in ableism with my children when I do not let them explore and challenge environments that I cannot fix for them.  School is hard for my son with intellectual disabilities.  Sometimes life is just hard.  If I continue to blame society, blame the system, or even blame my children for their struggles, then I am doing them a disservice and wasting valuable time not enjoying the uniqueness and abilities of the people around me. All of this has implications for how I practice as a social worker!

Mackelprang, R. & Salsgiver, R.  (2015). Disability: A diversity model approach in human service practice, 3rd edition.  New York: Lyceum Books.

Shakespeare, T. (2013). The social model of disability. In Ed., Davis, L. (2013). The Disability Studies Reader, Fourth Edition. New York: Routledge.

Erica Sarro
Erica Sarro, MSW Candidate at Salem State University (Note for Screenreaders: Photo depicts a young white woman with dark hair, sitting in a car)

Erica Sarro is a candidate for the degree of Masters in Social Work at Salem State University’s School of Social Work. She holds a B.A. in Social Work from Salem State University. She hopes to continue her career in policy-related macro social work. Mrs. Sarro chose to study social work practice with people with disabilities in order to become a better advocate for equal rights for people with disabilities. Mrs. Sarro can be reached at e_sarro@salemstate.edu. Her blog posts are published at www.disabilitysocialwork and you can Tweet her at @disabilitysw.

 

Containing schizophrenia: Confronting my ableism towards family members

In trying to understand my own ableism, I realize that I have not done a great deal of professional work with individuals with disabilities. Therefore, I’ll write a bit about the ableism I have engaged in with both my mom and brother as they both have a diagnosis of paranoid schizophrenia. My mom has had a disability since before I was born, and my brother’s disability was triggered 7 years ago. While I have made a great deal of improvement in terms of trying to keep ableism out of our family dynamics, I am still not perfect, but I am certainly trying.

As both the daughter and sister of people with paranoid schizophrenia, I have definitely engaged in, and still unconsciously engage in, ableism, that is, the “belief that because persons with disabilities are not typical of the non-disabled majority” (Mackelprang & Salsgiver, 2015, p. 105).

One type of ableism is containment, or “the practice of limiting the choices, exposure, and life experience of disabled persons, as well as opportunities for disabled persons to fully participate in society.” Looking back, I have discouraged my family members from trying to attain jobs, so they would not have to deal with the sadness or embarrassment that had accompanied the loss of previous jobs. I have also done this in order to prevent any disturbances with social assistance services that were in place.

The notion of expendability is also a form of ableism. Expendability is “the belief that persons with disabilities are expendable” (Mackelprang & Salsgiver, 2015, p. 106). I have considered avoiding childbirth out of fear that I would pass the genes for paranoid schizophrenia on to my offspring.

I have also engaged in the form of ableism known as ‘compartmentalization,’ and have, “imposed on them the sick role that prevents persons with disabilities from learning the skills necessary for economic survival and advancement”, when I tried to create a budget for their incomes to avoid an end-of-the-month lapse in funds (Mackelprang & Salsgiver, 2015, p. 115).

And I also admit that I have blamed the victim, which can be described as “the process in which those in authority or positions of respect fault injured parties for externally imposed problems” (Mackelprang & Salsgiver, 2015, p. 116). This has manifested when I have taken out my frustration on the recreational drug use that triggered both of their illnesses, but certainly did not cause their paranoid schizophrenia.

These are just a few of examples of my ableist behaviors that took place before I gained much-needed insight on ableism and disempowerment in my social work practice with people with disabilities course. I think these examples of ableism also provide another justification for the importance of seeing things through an intersectionality lens as well as the connection between poverty and disability. Much of the oppressive ableism that I have engaged in was perpetuated by the need for my family to stay afloat financially, and much of my oppressive anger was coming from a lack of needed resources. As an older and (hopefully) more mature person I can see that my anger was being geared in the wrong the direction.

Throughout my time in this social work course, my professor has worked to normalize the difficulty we face in confronting our own ableism. This is an essential task when you are taking such a critical stance on how your good intentions might have been more oppressive than helpful in social work practice. We, as social workers, know that using confrontation skills before a client is ready can cause the client to shut down. I argue that the same is true for beginning to recognize our own ableism with our clients and with our families. Constant reflection, both as family members and a practitioners, is a tool that pushes us learn from our experiences and generate the self-compassion needed to best confront the oppressions that society has built for our family, friends, and clients.

Mackelprang, R. & Salsgiver, R. (1999). Disability: A diversity model approach in human

service practice, 3rd edition. New York: Lyceum Books.

 

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This anonymous author is an M.S.W. candidate at Salem State University’s School of Social Work in Salem, MA.

This essay was written by an anonymous M.S.W. Candidate at Salem State University’s School of Social Work in Salem, Massachusetts.  The author may be reached on Twitter at @disabilitysw or via email at disabilitysocialwork@gmail.com.  This author’s blog posts are published at http://www.disabilitysocialwork.blog.

How wearing high heels during my commute helped me to be a better social worker

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A pair of red high-heeled shoes sitting on a white surface

Ableism is “the belief that because persons with disabilities are not typical of the non-disabled majority, they are inferior” (Mackelprang and Salsgiver, p. 105). Upon reflection, I have engaged in ableism against people with physical disabilities while on public transportation. Typically, I take public transportation during the peak hours of commuting to work between 7 a.m. and 9 a.m. and leaving work between 4p.m. and 6p.m. There are signs on the bus indicating that when a person with a disability enters the bus they are to be given seats in the front. Typically, people with wheelchairs or motorized chairs, walkers, canes and women with baby strollers occupy those seats; however when the bus is crowded during those peak times there is somewhat of a ‘all bets are off approach’ to seating and people tend to disregard those signs.

My example of demonstrating ableism involves a woman with a motorized chair who entered the bus one day. When she boarded the bus, everyone sitting in the front had to move towards the back to make space for her to enter and turn her chair towards the front. On this particular day, I had had a very bad interaction with a client at work. Mentally, I was not in a good state of mind as a result. I also had on heels which made my feet hurt from standing. Seats on either the left or the right could be used for a person with a disability, however the woman entered the bus and immediately looked towards the right where I was sitting. I knew this meant that I, along with another woman, should stand up and make room for her. The bus was very crowded and therefore moving towards the back felt like a nearly impossible task in order to make space for the woman in the motorized chair.

Without realizing it at the time, I was perpetuating a system of oppression onto the woman with a disability. Tom Shakespeare (2013) writes that the “social model (of disability) demonstrates that the problems disabled people face are the result of social oppression and exclusion, not their individual deficits”(p. 217). Looking back, I recall that I was upset that the woman with the motorized chair had turned to my side of the bus and I had had to get up. This response perpetuates a cycle of oppression because I used her disability as a source of rationalizing why she should be excluded from the bus.

Although I did not say anything verbally to the woman in the motorized chair, my face and body language gave a very descriptive picture of how angry I was that I had to move. The other women that were sitting next to me were verbal with their anger and made comments such as “she should have waited for the next bus, as there’s no space” and “why do we have to move for her?” In the moment I agreed with those women, and their outbursts. I was upset, tired, and in pain because of my heels. My only thoughts were selfish thoughts about wanting to get home so that I could get comfortable.

In retrospect, our attitudes were ableist because we were ostracizing the woman with a disability and trying to exclude her from riding the bus as everyone else was doing. I likened these feelings to feelings of the ‘survival of the fittest’; mentality that was prevalent during Darwin’s lifetime. People with disabilities were viewed as ‘undesirable’ and every effort was made to treat them as outsiders in society rather than practice inclusivity (Kevles, 1995, para. 2). At that time, people with disabilities were not viewed as fit to be amongst abled-bodied people. But back to the bus, the signs clearly acknowledged that the seats were for persons with disabilities or the elderly but due to our own selfish reasoning and justification we did not feel that that was satisfactory enough to warrant giving a seat to the woman in the motorized chair.

It is important for people to recognize their ableist nature so that when situations similar to the one discussed arise they can approach it with respect and empathy rather than disdain for the person with a disability.

Kelves, D. (1995). Essay: In the Name of Darwin. Retrieved August 14, 2017, from http://www.pbs.org/wgbh/evolution/darwin/nameof/page02.html

Mackelprang, R. & Salsgiver, R. (1999). Disability: A diversity model approach in human service practice, 3rd edition. New York: Lyceum Books.

Shakespeare, T. (2013). The social model of disability. In Ed., Davis, L. (2013). The Disability Studies Reader, Fourth Edition. New York: Routledge.

This essay was written by an anonymous M.S.W. Candidate at Salem State University’s School of Social Work in Salem, Massachusetts.  The author may be reached on Twitter at @disabilitysw or via email at disabilitysocialwork@gmail.com.