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Disability

Ramp Your Voice: New Organization Filling the Disability Advocacy Gap

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by Vilissa K. Thompson, LMSW

Your Voice, Advocacy 1Ramp Your Voice! is a new organization created to fill the gap in how disability advocacy currently exists in America.  Ramp Your Voice! seeks to ensure that minorities with disabilities have a place at the table when disability issues and life experiences are discussed and shared.  The establishment of Ramp Your Voice! aligns with my macro social work ambitions of sharing and educating the public about the barriers, issues, challenges, and progress of people with disabilities.

Numbers Don’t Lie

Failure to recognize  minorities with disabilities in the disability rights advocacy movement is unacceptable, given that there are more minorities with disabilities in America aged 21-64 than those of European descent.  According to Disability Statistics data collection for 2011, there were over 37.3 million individuals in America with some form of a disability.  Of that number, only 10.3% of individuals aged 21-64 identified as white/Caucasian, compared to 54.1% who identified as being a member of a minority group or of some other race.

The Danger of Ignoring the Voices of Minorities with Disabilities

Allowing minorities with disabilities to remain invisible within both the subgroup and society is truly disempowering, and can no longer be the standard.  In order for society to truly understand the necessary changes needed to improve the quality of life for people with disabilities, the stories and voices of minorities with disabilities has to be prominent in the movement.  Minorities with disabilities have just as much to contribute in the fight for equality as their white counterparts.  Having this unique focus in promoting self-advocacy among minorities with disabilities is what sets Ramp Your Voice! apart from other disability advocacy organizations.

Why Ramp Your Voice! Matters

My hope for Ramp Your Voice! is to share the stories and voices of ALL people with disabilities, regardless of their ethnic background.  Ramp Your Voice! will be a game changer in making this happen.  Empowering minorities with disabilities hits home for me since I am a proud woman of color with a disability.  I aim to share my own life story with those who have a vested interest in learning what it is like to live with a disability.  Becoming a consultant on disability rights issues is another means for me to become a prominent spokesperson in the disability movement.

I realized that I could not wait for someone to approach me about sharing my knowledge and experiences.  Instead, I have taken action in creating my own opportunity to share my story, and provide a platform for others to do the same.

How You Can Become a Part of the Ramp Your Voice! Disability Advocacy Movement

If you or someone you know would be interested in sharing his or her life experiences as a person with a disability, please review the “Calling All Self-Advocates and Allies” page on the website.  Interested persons and organizations may contact me via email, ([email protected]), or through the website’s contact page.  I am eager to write about individuals, as well as organizations working hard to improve the quality of life of those in the disability community.

If you want to support to this new movement in disability advocacy, visit the website, spread the word to others, and follow me on my Facebook Fan PageTwitterGoogle+, and Pinterest.  

RYV Words Only Logo 1I am prepared to “ramp” my voice for change; what are you willing to do?

 

You must be the change you wish to see in the world.

– Mahatma Gandhi

1 Comment
Juma Waziry Juma Waziry says:

Good, from africa

Disability

How Wearing High Heels During my Commute Helped Me to Be a Better Social Worker

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Ableism is the idea that people with disabilities are not typical and are, therefore, inferior. 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, and 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 an ‘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’d 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. Disability studies scholar Tom Shakespeare states that society is a disabling factor in the current social model of disability. He argues that it promotes the social oppression and exclusion of people with impairments – as opposed to a focus on the impairment itself as the problem. 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 ostracized 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. As a recent PBS documentary discusses, people with disabilities were viewed as ‘undesirable’ and every effort was made to treat them as outsiders in society rather than practice inclusivity.

At that time, people with disabilities were not viewed as fit to be amongst abled-bodied people. As it relates back to the bus, the signs clearly acknowledged the seats were for persons with disabilities or the elderly. However, due to our own selfish reasoning and justification, we did not feel it was enough to warrant giving a seat to the woman in the motorized chair.

It is important for people to recognize their ableist nature so 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.

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 [email protected]  This author’s blog posts are published at www.disabilitysocialwork.blog.

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Disability

New Study Looks at End-of-Life Decision-Making for People with Intellectual Disabilities

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A new study by researchers at the University at Buffalo provides a groundbreaking look at how advance care planning medical orders inform emergency medical service (EMS) providers’ experiences involving people with intellectual disabilities.

Most states in the U.S. have programs that allow terminally ill patients to document their end-of-life decisions.  In New York, the Medical Orders for Life-Sustaining Treatment form (MOLST) allows individuals to document what measures health care providers, including EMS providers, should take near the end of a patient’s life.

Studies suggest that this approach to person-centered advance care planning can alleviate a dying patient’s pain and suffering, according Deborah Waldrop, a professor in the UB School of Social Work and an expert on end-of-life care. Yet little research on end-of-life decision-making has been done on the growing population of older Americans with intellectual disabilities, which the American Association on Intellectual and Developmental Disabilities defines as a disability characterized by significant limitations in learning, reasoning, problem solving, and a collection of conceptual, social and practical skills.

Waldrop and Brian Clemency an associate professor of emergency medicine in the Jacobs School of Medicine and Biomedical Sciences, authored one of the first scholarly examinations of how pre-hospital providers assess and manage emergency calls for patients who do not wish to be resuscitated or intubated.  Jacqueline McGinley, a doctoral candidate in UB’s School of Social Work, joined their research team and served as first author for their most recent work.

Through a series of interviews with five different emergency medical service agencies in upstate New York, the researchers asked EMS providers specifically how forms like the MOLST shape what they do in the case of someone with an intellectual disability.

“The best available research before our study suggested that as of the late 1990s, fewer than 1 percent of people with intellectual disabilities had ever documented or discussed their end-of-life wishes,” says McGinley. “But with this study, we found that about 62 percent of the EMS providers we surveyed had treated someone with an intellectual or developmental disability who had these forms.”

That disparity points to the need to illuminate this understudied area of how people with intellectual disabilities are engaging in end-of-life discussions, according to McGinley.

She says the EMS providers’ charge is to follow protocol by honoring the documents, their directions and organizational procedures. The MOLST, as its name implies, is a medical order that providers are professionally bound to respect.  Their procedures are identical for all emergency calls involving someone who is imminently dying regardless of a pre-existing disability, the study’s results suggested.

But questions remained.

“We heard from providers who wrestled with the unique issues that impact this population, including organizational barriers when working across systems of care and decision-making for individuals who may lack capacity” says McGinley.

There are approximately 650,000 adults age 60 and older in the U.S. with intellectual disabilities, according to Census Bureau figures from 2000. Demographers expect that figure to double by 2030, and triple within the foreseeable future.

Person-centered advance care planning specifically involves the individual in discussions about their health history, possible changes to their current health status and what future options might be available in order to best inform that person’s end-of-life decision-making.

The results, published in the Journal of Applied Research in Intellectual Disabilities, suggest that medical orders largely favor efforts to prolong life. This may be due to a reluctance to discuss advanced care planning in this population.  Still, this sociocultural context must be strongly considered as future research explores how people with intellectual disabilities engage in end-of-life discussions.

Since January 2016, Medicare pays for patients to have advance care planning conversations with medical providers. In fact, at least once a year, as part of a service plan through the state, people with intellectual disabilities have face-to-face discussions with their service providers, according to McGinley, who notes the importance of this built-in opportunity to have conversations about serious illness and the end of life.

“What’s most important in all of the work we do is knowing that people can die badly,” says Waldrop. “We know we can make changes that illuminate some of the uncertainties and improve care for people who are dying. Knowing how forms, like the MOLST, are applied in the field is an incredible step in the right direction.”

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Disability

Moving Beyond “Fixing” People: Social Work Practice with People with Disabilities

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Working on a boarding high-school campus, I have the opportunity to be exposed to different students. During my first year, one student, in particular, stood out. J.M. was a breakout basketball star and had dreams of going to the N.B.A.

Unfortunately, in his junior year, he was in a terrible car accident and as a result was paralyzed from the waist down. Everyone on campus was affected by his accident because J.M. was such a bright presence on campus and when he came back, he was a different person. He was less interactive on campus and lost his love for basketball.

The adults who were working with him every day were so fixated on the medical model, they wanted to “fix” him as much as they could so he could be ‘normal’ again. They suggested to his mom to take him to the best doctors who specialize helping people who are paraplegic learn to walk through virtual reality. They were not focused on his direct needs because they did not ask him, and that was detrimental to his recovery.

In using the social-model informed practice, the adults working with J.M. should have discussed with him how he saw his recovery going. By placing the focus on him rather than his disability, J.M.’s confidence in recovering could have been more positive than negative. Indeed, disability studies scholar Tom Shakespeare discusses the importance of focusing on the individual and not the impairment in order to create a confident space.

One of the limits in the social model approach, Shakespeare says, is the idea that individuals with disabilities should disregard their impairments. More specifically, the social model disavows both individual and medical approaches so much that it actually risks the suggestion that impairments are not the problem!

The medical model is helpful when we are utilizing action practices that are suggested by the person with the disability and not the people around them who are looking at it like a problem that needs to be corrected. As social workers, it will only benefit the clients we are working with if we are their advocates and find a balance between the medical model and the social model.

This essay was originally prepared for Dr. Elspeth Slayter’s social work practice with people with disabilities course at Salem State University’s School of Social Work  Graduate students were asked to reflect on the ways in which they approach their work with clients with disabilities. Specifically, they were asked to reflect on what aspects of their practice were “under” the medical model of disability and which were “under” the social model of disability.

Students were first introduced to the medical model of disability, in which the person’s impairment was the focus. Then, students were introduced to the social model of disability, in which society is seen as the disabling factor as opposed to the part of the person with the impairment. In order to begin to re-visualize what social work practice with a client with a disability would look like, students were asked to answer the following question:

“How can social workers approach the needs of people with disabilities without perpetuating the negative impacts associated with the medical model of disability? Provide a case example and then describe how you could/do/would engage in medical model-informed practice and social model-informed practice with that client.”

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