#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?

 

Let’s Talk about Sex and Disability

This article was written by Amber Melvin. It was originally posted on the Unite for Reproductive and Gender Equity (URGE) website on February 19, 2015. It has been posted here with both her permission and the permission of URGE.

 


 

Please note this article uses the term “disabled person” rather than the person-first language of “person with a disability” to acknowledge how disabilities are not a result of one’s body, but disabilities are created by structural barriers that make it more difficult for folks with different bodies to navigate the world.

Picture of Amber Melvin with purple hair holding a sign that says 'Pro-Health Pro-Life Pro-Woman Pro-Choice'Disabled people have sex. Disabled people sometimes have sex with able-bodied partners, sometimes with partners who are also disabled, and sometimes disabled people have sex with themselves. These statements are often shocking to the uninformed because many people do not think of disabled people as being interested in or capable of having sex.

Some people’s ability to experience sexual pleasure may be altered by their impairment or disability; however, this is not often the case.  While there has been some research into the sexual dysfunction of people with physical impairments, outside of the physical limitations of the body, there has been very little analysis of what we need to do to meet the sexual needs of disabled people.

The issues for disabled people in regard to our sexuality are diverse and complicated; therefore the solutions for them will likely be just as complex.  Sadly, whether it is academic research or training for health professionals, the reality and needs of disabled people who want to have healthy sex lives is largely ignored.

As a teenager with a visible impairment, sexual and reproductive health was not discussed with me until my late teenage years.  While my peers were hearing about the birds and the bees, the only nod to my future sex life was when I was urged to see a geneticist to discuss the likelihood of having disabled children.

None of my healthcare providers ever mentioned sexual activity or protection from sexually transmitted infections (STIs) to me. My only interaction with medical professionals regarding sexuality and reproduction was done in a way that could have potentially dissuaded me from having children in the future.

Like many disabled people, I was treated like a case to be solved.  My disability was looked at as a condition to be overcome through medicine, science and adaptive devices.  I was not seen as a whole person who might do things differently, but who has the same desires, fears and questions that any teenage girl would have.

A critical first step in addressing the unmet needs of disabled people is to look at the work being done by the reproductive health, rights and justice movement and identify the missed opportunities.  We cannot advocate for comprehensive sex education if it does not include reference to the needs and acknowledgement of the sexuality of disabled people.  While many young people learn sexual knowledge from their peers, a study of disabled young people looked at how disabled youth have even less access to health education from peers because they may be socially isolated.

Disabled people are often seen as asexual, so discussing their needs in a school-based, sex education class can actually help to change that image and open up the opportunity for young, disabled people to feel better able to talk about their own fears and desires.  The fact is that communication skills are important to all young people as they try to create healthy relationships.  By encouraging people to consider the specific needs someone with a disability might have, we would be helping all young people to have an awareness of and begin to develop the language to navigate things like needs, consent and pleasure.

Ensuring inclusive information in the classroom is critical.  We also need to look at improved access to the services to manage and protect the sexual health of disabled people.  With the passage of the Affordable Care Act, there has been both renewed attention and some funding to support cultural competency in health care.  As part of these efforts, we should look at how to better train health professionals to consider the needs of disabled people.

Young able-bodied people may be asked by their doctors if they are sexually active or how many partners they have had, or they may have had condoms or birth control offered to them; while people with visible impairments may not receive the same questions or concerns due to assumptions about their sex life or desires. Further, some disabled people may have different needs in accessing these things if they are unable to bring them up out of shyness, embarrassment or because of language that assumes that disabled people would not need the same kind of information or support.

Disabled folks, just like other young people, should be counseled and educated about STI testing, resources on safer sex practices for all sexual identities including LGBTQ folks, birth control, and vaccinations against STIs beginning in adolescence.  Health professionals should also have resources or information about issues related to sex and disability.

But safe sex and contraception are not the only sexual and reproductive health needs of disabled people.  As we go through life, we ask the same questions of whether or not we would like or are ready to be parents.  We may need to seek abortion care.  We may want to become pregnant. Gynecologists should talk to disabled people about plans for pregnancy and families and any particular preconception needs we may have.   Many disabled people I have talked to expressed concerns and assumptions about their own ability to carry a pregnancy or raise children.  We should be able to seek out health professionals to help support us in finding the information we need to consider our parenting options, without encountering bias and fear-mongering because of assumptions others (yes even medical professionals) have about our ability to parent.

Expanding the way that we look at sex education and cultural competency in health care are just some of the ways that we can begin to meet the reproductive and sexual health needs of disabled people.  Taking these important first steps would show that while we don’t always get it right, we are a movement that is trying to represent and respect the voices, lives and experiences of all people.

Amber Melvin is the Programs and Policy Assistant at Reproductive Health Technologies Project and an URGE alum from California State University, Long Beach.

Hiring Aides

by Eva Sweeney and GimpGirl Community

Regardless of how many hours you need, finding an aide can be daunting. Aides, personal care assistants, carers and helpers are all titles for people you hire to help you. Some of us just need help getting up in the morning and getting in bed at night. Some of us need twenty-four hour assistance.

In a previous article, we discussed balancing relationships and aides. You need to find someone who can do all the tasks you need, but also respect you. You need to be comfortable with this person in your home. However, getting started on the hiring process can be overwhelming to beginners.

Here’s a list of tips to help you find a good aide:

  • If you’re putting an ad on Craigslist, in your local paper or with local college job boards, consider not only writing what the job entails, but also include a little bit about yourself. This lets people know a little bit about who you are, and if your personality will match. Have people email you rather than call– what they write will tell you a lot. If they just write “I need a job” then you know they’re not particularly interested in working for you. Likewise, if they tell you their whole life story, you should probably avoid interviewing them.

  • Sometimes less experience is better! If you feel confident training someone on how to do tasks, you might consider hiring someone with zero experience. People who have done this work before often have preconceived notions about how to do certain tasks or how to act. You don’t have to “retrain” people who haven’t done the job before.

  • When people email you and sound like a possible candidate, you might want to send them a list of pre-interview questions to answer. Such questions can be, “What about this job appeals to you?” and “Do you have any back problems?” Having this pre-interview definitely weeds out people who won’t be a good fit– and saves you time and energy.

  • Interview, interview, interview! (And interview in-person!) You might consider having another person with you while you interview. This helps you get a second opinion on the interviewee. Even if you work through an agency, it is your right to interview a person before saying yes to them.  You might have to explain to your agency why you would like to interview people before you say yes.  But if you do it in a calm, rational manner agencies are likely to understand.

  • Have a list of questions ready. Questions can range from “Can you lift and do personal care?” to “What are your hobbies?” Preparing questions beforehand makes the interview go smoothly. Asking a potential employee about hobbies might seem weird, but it’s a good way to see what their personality is like and if  they’re a good fit for you.

  • Ask what questions the person may have. If they ask about pay and nothing else, it’s probably not a good sign. If they ask about you or the duties of the job, it shows they’re thinking seriously about the job.

  • Watch them! If they don’t look directly at you or they seem uncomfortable, it’s probably not a good fit. But remember interviews are nerve-wracking, so the person might be a little nervous.  Try to casually talk with the person to see if they open up and relax a little.

  • Outline in detail the duties of the job. This ensures you and the person that you are interviewing that you are both on the same page about what the job entails. Ask if they’re uncomfortable with any aspect of the job.  If so, try to alleviate their concerns.

  • Suggest the person take a day to see if they really want this job. Most people are excited in the interview, but they don’t take the time to consider if they are really fit for the job. This cuts down on people starting work and then later realizing they are not up for it and then leaving.

  • Consider a time commitment. It is reasonable to ask people to stay for 3, 6, or 12 months. This cuts down on the turnaround that is common in these jobs.

  • Possibly do a second interview where you and the person just chat and get to know each other. This shows if you two get along or if they annoy you. If the latter happens it’s probably not wise to hire them.

  • Consider making the first month a trial period for both of you. That way if you don’t find your personalities meshing well, or your new hire doesn’t feel comfortable with any of the tasks, you both can say, “It’s not working out” without feeling like you’re breaking the time commitment.

  • Think about writing a training manual for your new hires. Describe in detail how you would like each task to be performed. When you hire someone, you can email them the manual but remember to say that they don’t have to memorize it.

  • If possible, have one of your past aides help you train your new one. Explaining things in words is great, but having someone show them what to do makes everything go more smoothly. Also for things like lifting, you probably have a limited understanding since you haven’t lifted yourself.

Here is an example of a job posting for hiring an aide:


Title: Live-in Secondary Caregiver (Independent Provider)

Start Date: June 15, 2012

Length of Job: Summer/2.5 Months (approximately)

Wage/Compensation: $XXXX/month (approximately, can vary) + free rent (furnished room) [Note: This could include anything given in exchange for aide services.]

Job Contact: First Name, Email Address

Requirements:

  • I am a relatively quiet, involved, intellectual woman with a physical disability who is highly involved in various community projects. I am also a cultural anthropology student. I will treat you as a capable, equal human being and I expect the same treatment in return. As we will be both working and living together for a period of time, we will need to have compatible personalities. I encourage you to share your unique personality with me in every contact, as it is more important to me than anything else in the hiring process for this particular position.

  • You must be registered as an independent provider through the State of XXXX prior to the start date, and follow-up with required state training sessions in order to get paid. This process can be started after the interview process and should not take long. The process requires a background check, legal identification and authorization to work in the United States. [Note: Licensing requirements differ in different states and countries. If you rely on government funding, be sure to educate yourself on what local process an aide may need to go through in order to get paid.]

  • No other training or experience is required other than the ability (physical and otherwise) and willingness to learn basic caregiving duties.

  • Any gender is welcome to apply.

  • References are required and will be checked.

  • Valid drivers license is preferable, though not explicitly required.

Job Duties:

  • You will be responsible for relatively light caregiving duties on nights and weekends for the duration of the job. Duties generally include: occasional cooking, feeding, and toileting; bedtime routine; overnight monitoring in case of emergency.

  • Even though I am an extremely busy woman, I enjoy getting out of the house every now and then to have fun on the weekends. On these occasions, you would be responsible for getting me dressed and accompanying me on the trip. If you have a valid drivers license, you would be driving my wheelchair accessible minivan.

  • You will also be responsible for emergency backup duties if the regular daytime caregiver is unable to carry out their duties. The regular daytime caregiver is through an agency, so backup duties should be relatively rare as the agency is responsible for finding coverage for those hours.

Note:

Hours and responsibilities are somewhat negotiable, depending on our compatibility and your availability. Even though you would be hired as a live-in caregiver, there are generally long periods of time (up to 4 hours or more at a time during the day) when I will not actively need your help. This would be the perfect situation for someone who needs to take summer classes, or has an internship or day job during the week. Hours can be slightly adjusted to accommodate such schedules, and you will have plenty of time to study or meet friends for a meal in between duties. Any adjustments may affect your compensation.


Even if you have lots of experience, hiring an aide is always a gamble. Some working relationships work out wonderfully, and others don’t. Learning to manage aides is a process, and we all have negative experiences along the way. Hopefully these tips will guide you through getting started on the process.

Lets hear from you! Do you have any have any great tips on how to hire an aide or an experience you’d like to share?

Domestic Violence Support for Women with Disabilities

Women with disabilities account for over 20% of the general population (Office on Disability Prevalence…, n.d.), and experience rates of abuse 1.5 to 10 times higher than women without disabilities (Sobsey, 1988). However, shelters are largely inadequate to support the needs of women with disabilities who want to escape violence. According to a study by Nosek, Howland and Young, 83% of shelters offered or made referrals to temporary wheelchair accessible housing, 47% provided interpreter services to deaf or hard of hearing individuals, and only 6% offered assistance with caregiver services (1997). Additionally, even if services are available, staff only receives disability awareness training in 36% of shelters (Nosek, Howland & Young, 1997). When a woman contacts a domestic violence service, she often ends up having to educate the staff about disability. She may even end up emotionally supporting the staff through the awkward exchange of dubious information. The dearth of services – combined with a profound lack of access to information — often leaves women with disabilities feeling like there is no escape.

The absence of support for such accommodations for women with disabilities is largely because the general population is unaware of the rates of abuse this demographic experiences. The dearth of information is simply an outcome of this severe lack of awareness. People have no idea that rates of violence can be up to 62% over a women’s lifetime, and much higher for women with severe learning disorders (Nosek, Howland & Young, 1997). Women with disabilities — from every demographic — experience higher rates of abuse than women without disabilities.

When a woman with a disability experiences domestic violence, the perpetrator is usually an intimate partner, family or caregiver (Nosek, Howland & Young, 1997). Economic constraints or lack of independent ability to leave a violent situation puts women with disabilities at a severe disadvantage. They can be completely at the mercy of those around them, and without a safety net of other family assistance or community services, women with disabilities have no way of escape. Unfortunately, shelter services are notoriously incapable of handling accommodations — such as wheelchair access, sign language interpreters, caregivers and other disability specific needs — required by domestic violence survivors with disabilities.

Violence is often a crime that takes the path of least resistance. Women with disabilities are easier to control economically, physically and emotionally due to a myriad of reasons, such as stereotypes, their potentially lowered ability to make money (due to practical or systemic constraints), and dependence on inherently problematic institutions and social services. They are often raised with heightened forms of infantilization and pedestalling. “Good” girls and women with disabilities are compliant, grateful, and constantly happy, while often simultaneously being treated like a burden to those around them. If disabled from birth, that may be all a woman with a disability will expect of herself. They are “easy” targets for perpetrators of violence, especially because of their limited ability to escape the situation.

In order for the deeper issue of awareness of violence against women with disabilities to change, people would have to face the facts behind violence against women in general, as well as deeply ingrained stereotypes about people with disabilities. “Good” people would never dream of perpetrating violence or rape against women with disabilities, predominately because they do not view women with disabilities as sexual or threatening. They do not understand that abuse and rape are not about who deserves it, mainstream stereotypes of sexual attractiveness, or the ability of the person being abused to defend themselves. It is about control, and vulnerability only makes control easier.

A woman who needs assistance may have no idea where to find support when she experiences domestic violence. It is the responsibility of shelter agencies to provide this basic information to women with disabilities, even if there are no services available. Women with disabilities are often put in the position of having to fight through a maze of bureaucracy to find out that there are no supports available – effectively revictimizing a woman already in crisis. Even knowing what is not available allows an individual to allocate precious energy to workable alternatives. This information is vital to someone seeking assistance, and the lack of information only adds to the profound silencing women with disabilities in this situation experience.

Women with disabilities face rates of abuse that are 1.5 to 10 times greater than women without disabilities in any demographic (Sobsey, 1988). Yet, they often do not receive the same supports that women without disabilities in domestic violence crisis receive. They face the same violence in profound isolation and silence, with less ability to protect themselves. When they do reach out to find a safer situation, women with disabilities are met with confusion and a severe lack of information on what little services are actually available. This should not be acceptable in the domestic violence support community – a community that was founded on feminist principles to assist women seeking safety and alleviate the silencing that often accompanies abuse.

s.e. smith also wrote about this issue on the This Ain’t Livin’ blog earlier this month: Access Denied: Crisis Centres and Disabled People. Check it out!

Bibliography

Nosek, M.A., Howland, C.A., Young, M.E. (1997). Abuse of Women with Disabilities: Policy Implications. Journal of Disabilities Policy Studies.

Office on Disability Prevalence and Impact Fact Sheet. (n.d.). U.S. Department of Health & Human Services. Retrieved February 29, 2012, from http://www.hhs.gov/od/about/fact_sheets/prevalenceandimpact.html

US Department of Justice. (2002). Americans with Disabilities Act Questions and Answers. Retrieved March 9, 2013, from http://www.ada.gov/q%26aeng02.htm#Public

Sobsey, D. (1988). Sexual Offenses and Disabled Victims: Research and Practical Implications. Vis-A-Vis.

Accessible Gynecologists

 

A common barrier faced by many women with disabilities is finding a gynecologist with an accessible office and the knowledge and flexibility to work with complications associated with various disabilities. Some time ago GimpGirl members got together to start a list of gynecologists that they had personal experience with and knew to be accessible. Not surprisingly, the list was not very long because of the relative rarity of accessible gynecologists.

However, we are constantly looking for more feedback to expand this list to include other states within the United States and other countries. This information is a vital tool to help other women finding doctors and facilities that they can work with. If you have personal experience with a doctor or facility you would recommend, please take a few minutes to anonymously fill out the Accessible Gynecologists Survey so we can make that information available to everyone!

If you don’t personally have anyone to recommend, consider passing on this information to your friends. Thank you to everyone who has helped gather this information!