#AdiosStigma Invisible Illness Twitter Party by Adios Barbie

 

On Monday, September 28, GimpGirl representative Katherine Mancuso participated in Adios, Barbie‘s #AdiosStigma Twitter Party, to discuss the issues surrounding invisible illness and celebrate Invisible Illness Awareness Week. The discussion included several panel members with both professional and personal experience, and covered a wide range of topics including confronting ableism and related caregiver issues.

In an effort to continue the discussion on invisible illness, we are sharing information compiled by the awesome folks at Adios, Barbie. To access the infographic image, click or select the thumbnail image associated with each infographic text.

Get to Know Invisible Illnesses, demographical statistics on invisible illness done by Adios Barbie for #AdiosStigmaInfographic: “Get to Know Invisible Illnesses”

  • More than 125 million Americans are living with at least one chronic condition
  • Over 95% of people living with an illness have an invisible illness
  • 60% of those with invisible illnesses are between the ages of 18 and 64
  • 4 out of 5 health care dollars in the US are spent on chronic or invisible conditions
  • For 34% of people, the person closest to them with an invisible illness is a parent
  • Rates of depression are 15-20% higher for people with invisible illnesses

By: @AdiosBarbie for #AdiosStigma

Sources: Molly’s Fund, Invisible Illness Awareness Week, and Seattle Dizzy Group.

Mental Illness Is the Most Common Invisible Illness On College Campuses, statistics done by Adios Barbie for #AdiosStigmaInfographic: “Mental Illness is the most common invisible illness on College Campuses.”

  • Stigma is the number one barrier that stop students from seeking mental health services.
  • 73% of students experience a mental health crisis while in college.
  • Only 13% of students would rate their college’s response to mental health as “excellent”.

By: Adios Barbie for #AdiosStigma

Source: College Students Speak: A Survey Report on Mental Health, NAMI 2012 [PDF]

Mental Illness On Campus, statistics on mental illness in college done by Adios Barbie for #AdiosStigmaInfographic: “Mental Illness On Campus”

  • One in 10 students contemplates suicide
  • 64% of students who drop out of school do so because of mental illness
  • Nearly 75% of students experience a mental health crisis in college

By: Adios Barbie for #AdiosStigma

Source: Nine out of Ten, National Alliance on Mental Illness

The Costs of Caregiving, a table of statistical information on caregiving done by Adios Barbie for #AdiosStigmaInfographic: “The Costs of Caregiving”

  • 65% of caregivers have not had a vacation in the past year. 51% of caregivers report no time to take care of themselves and almost half (49%) said they were too tired to do so.
  • The out-of-pocket costs for caregivers who are caring for someone who was age 50 or older was $5,531 in 2007.
  • 40% to 70% of caregivers have clinically significant signs of depression. Elderly spousal caregivers (age 66-96) have a 63% higher mortality rate than noncaregivers of the same age.

Who is a Caregiver?

  • 66% of caregivers are female
  • Average age is 48
  • 1/3 care for more than one person
  • 46% of lesbian, gay, bisexual and transgender elders caregive

By: Adios Barbie for #AdiosStigma

Source: National Alliance for Caregiving, American Association of Retired Persons, National Gay and Lesbian Task Force Policy Institute, Caregiver.org

 

What is your experience with invisible illness? Do you these statistics reflected in your experience?

 

Going to College with a Disability

 

by Eva Sweeney, Hannah Langlie, Julie McGinnity and GimpGirl Community

Transitioning from adolescence to college (or university) life is scary at times for most students. However, being a college student with a disability definitely comes with its own unique challenges. This article explores many of the common pitfalls experienced by students, and how individuals successfully addressed these barriers.

Although high schools in some countries (such as the United States) are required to assist young adults with disabilities transitioning to a successful adulthood, many of these programs aren’t designed for a transition to college. These programs are often built around the false assumptions that disabled students are not going to attend college, or have aspirations beyond menial jobs and living at home (or in a group home). These programs are also staffed by adult, able-bodied professionals who do not have first-hand experience with living as a disabled person, and role models who have experience are rarely introduced.

As a high school student, these well-meaning programs can be a tremendously disempowering experience. Individual needs can get lost in a sea of bureaucracy and paperwork, and are often not addressed in meaningful ways. The system is not designed to give students all the tools needed to take charge of their lives and truly live independently.

Not surprisingly, in the United States only 53% of students with disabilities have completed a degree or vocational program, as opposed to 64% of their nondisabled peers (Cole, pg. 2). Students with disabilities don’t finish for many reasons, including lack of educational programs, not having access to funding, problems with coordinating support services like personal care attendants (PCAs) and medical care, unexpected medical complications, geographical access barriers like snow or long commutes, and physical access barriers like inaccessible classrooms or student housing.

We have put together a list of helpful tips for navigating the confusing landscape of college life. These tips are taken from our own experiences, as women with various disabilities, and should in no way be taken to represent all access needs. Eva attended a small, liberal arts college in Los Angeles. She uses a wheelchair to get around and speaks with a letter board since she is non-verbal. Hannah is currently a third-year college student in Seattle studying journalism. She uses a power chair most of the time and lives on campus. Julie is a master’s degree student studying music, and utilizes Braille and readers.

Balancing Academics and Practical Needs

Managing practical needs (such as personal care or navigating between classes) is critical to succeeding in college, so it is important to know what supports and accommodations are available. It is important to remember that every situation is a little different, depending on your personal needs and the college you choose. The quotes below relate each of our personal experiences.

Coordinating Disability Services

The vast majority of post-secondary schools (in the United States and other countries) have a disability services office that is suppose to coordinate all of the support services and accommodations needed by students to be successful. However, the responsiveness of the staff and quality of the services provided in each disability services office varies widely. We had very different experiences:

“My college’s disability services person was god awful. All my professors trusted me, so when I needed more time for tests, I just took the test in the cafeteria. I also couldn’t stay in the same room since my aide voiced what I’d be spelling out on my letter board and therefore, giving everyone my answers. My professors knew I wouldn’t cheat or copy the test for others. When I was done, I would just drop it off in their office. If I had used disability services, it would have been tons of unnecessary paperwork and time for each test. When I started each semester, I would email my professors and introduce myself. I would briefly explain cerebral palsy and that I would have an aide accompany me to class. I would also troubleshoot any potential issues. For example, my Human Anatomy class did a lot of work handling model bones. I can’t use my hands so instead, my professor would explain where certain bones are in my body. When I took painting, my professor was worried at first about how I would participate. But with an explanation and one or two classes, she quickly got it and I became one of her favorite students.” — Eva

“I choose to meet with each of my professors that I don’t already know before the quarter starts to go over my accommodations. Although I do use disability services, I don’t always use the accommodations for every class, I am able to customize them for what classes I need. Usually, a face-to-face meeting will help offset any anxiety that a professor might have. Because I use dictation software to write most of my papers and tests, I have a similar situation that I can’t be in the class with all of the other students, so sometimes I have to work this out, depending on what the test entails.” — Hannah

“I have always used disability services. Since I don’t have the time or energy to scan my books into accessible formats, I find them useful for this purpose. I have also worked with them to get Braille, which is very important to me. Since the college is obligated to pay for Braille, I prefer to go through them rather than trying to pay for it on my own. I try not to take tests through Disability Services though. It is much easier to arrange to take a test with a reader in a professor’s office or just take the test with the rest of the class.” — Julie

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