#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.

Oh, Your Shelter Isn’t Accessible? – And Other Reasons Women with Disabilities Experiencing Violence Cannot or Do Not Seek Help.

This article was written by attorney and advocate Stephanie Woodward. It was originally posted on her blog Ms. Wheelchair Florida 2014 on July 23, 2014. It has been reposted here with her permission.

 


In my last post I wrote about how society’s treatment of women and girls with disabilities can contribute to the domestic violence we experience. Essentially, when you treat us like we’re a burden or like we’re worth less than other women, we start to believe it ourselves. I wrote about this to raise awareness about not only domestic violence against women with disabilities, but also to raise awareness of how society views and treats women with disabilities.

Many women and men with disabilities lauded my post and thanked me for finally talking about this issue. Many women and men without disabilities thanked me for bringing this issue to their attention and truly reflected on their actions and how they could help make a change in how society treats women with disabilities. Unfortunately, some people took this as an opportunity to question and challenge both the domestic violence women with disabilities experience and the societal treatment of women with disabilities. They demanded evidence of the domestic violence rates for women with disabilities and proclaimed that it’s not just women with disabilities that experience such violence.

Well, duh. Obviously others experience this violence, but the point is that women with disabilities experience it at much higher rates. If you want evidence, go to google. The statistics and facts I give you are not from secret sources. They’re from the DOJ, they’re from national and international organizations that spend large parts of their budgets doing research on this issue, and they’re from real women who experience the abuse.

The point is women with disabilities experience much higher rates of violence (Want proof? Check out the DOJ’s Bureau of Justice Statistics that show in 2011 women with disabilities were THREE TIMES as likely to be victims of violent crimes than women without disabilities).

There are many reasons that women with disabilities who experience violence don’t seek help. Sometimes there are physical or systematic barriers that prevent a person from seeking help. Sometimes it’s societal issues, like the self-esteem issue I wrote about last time.

I chose to write about the self-esteem problem last time because that is what I know best. I feel that before articulating stories about other women I needed to share my own, after all, my story is mine to tell. The experiences that other women have gone through are not my own, therefore they are not my stories to tell. However, in order to end violence against women with disabilities, society needs to learn about the problem. We can’t stop a problem that we don’t know exists.

For this reason I am providing you a list of why some women with different disabilities cannot or do not seek help. This list is by no means comprehensive. The examples I have included are real examples from real women who experienced real abuse. I have not included their names or any other identifying information.

Poverty

Many women with disabilities have fewer economic resources, thereby increasing their inability to seek help. Poverty is a factor that prevents many people without disabilities from seeking help. For women with disabilities, it’s a bit different.

Imagine you are a woman living in poverty and you are being abused.  You may not seek help because you fear that you will not be able to afford your own home, food, transportation, and other living expenses without your abusers financial assistance. You may have kids too. How will you be able to support them as well? These are real concerns that people with and without disabilities face.

With disability it goes a step further. Imagine you are a wheelchair user. You live in a rural area with no bus stop in your area. No paratransit either. You certainly don’t have a wheelchair accessible van because those things are ridiculously expensive and you can barely afford to pay your rent. How will you get out of your house to go to a shelter or any other place to seek help? Accessible taxi? Ha. They’re still fighting like hell to get accessible taxis in NYC, they certainly don’t have them in your neighborhood.

Fear

All people who experience abuse struggle to leave because of fear. Every person is different and fears different things, but people with disabilities have fears that people without disabilities don’t usually even think of.

Fear of losing assistance or being institutionalized

Say you’re a person with a disability that requires assistance from a personal care attendant, but your attendant is abusing you. Your attendant started off fine, helped you shower and get dressed, but eventually she became controlling. She started becoming more aggressive when helping you shower and dress. Then she started hitting you when you took too long to put your pants on. A few times when she got really angry she would put her cigarettes out on your legs. You want the abuse to stop, but if you report your attendant then you won’t have anyone to help you shower and get dressed every day. How will you get out of bed in the morning? If you go without an attendant for too long, insurance will deem that it is “unsafe” for you to live in the community without support so you will be sent to an institution. An institution where you lay in bed all day, eat whatever gross food they put in front of you, never go outside, and possibly experience more abuse. What do you do?

Fear that you will get in trouble

Now let’s say you’re a person with an intellectual disability. You live in a group home and one of the employees is sexually abusing you. You know what is happening is wrong, but when the employee touches you sometimes it feels good to you. You’re afraid to tell because you know what is happening is wrong, but you think you might get in trouble because it felt good to you. So you don’t tell because you don’t want to get in trouble.

Fear of Not being Believed

What if you’re a woman with a mental health disability? Maybe you have anxiety or depression or a personality disorder or maybe PTSD. You are being abused by your partner or your parent or someone else close to you. You want to tell someone about the abuse, but you fear no one will believe you because everything thinks you’re “crazy” already.

Fear of Further Abuse

You’re a woman with a disability that lives in the community and your attendant is abusing you. She hits you occasionally when she gets angry, she leaves you sitting in the same position for hours which causes you to get bedsores that become infected, and sometimes she thinks it’s funny to refuse to help you with your toileting needs and you end up sitting in your own feces for hours. If you tell someone, maybe your attendant will find out and make things even worse on you. Right now she only hits you sometimes and neglects you, but if you tell she might start hitting you more or worse. Maybe it’s better if you just suck it up and don’t tell anyone so things don’t get worse.

Inaccessibility

Physical Inaccessibility of Shelters

You use a wheelchair and your husband is beating the crap out of you all the time. You’re fed up. You know you shouldn’t have to take this. You find a way to get to your local women’s shelter to seek help when your husband is out of town for the weekend. You get to the front door of the shelter and you only see stairs. You can’t get in. So you call the shelter while you sit outside, staring at the steps that are preventing you from seeking help. They come out and agree to carry you and your chair inside. It’s humiliating, but you take it because it’s your only way to get away from the abuse. Once you’re inside you try to go into an office to talk to an employee, but the doorway is too small and you can’t get in. They come out and you meet in another area and then show you around the shelter. You try to get in the bathroom, but it’s completely inaccessible. The bed is so low that you can’t independently transfer yourself from your chair to the bed. So you can’t sleep there or go to the bathroom there or even get in and out of the door without others carrying you, how could you possibly stay?

Programatic/Systematic Inaccessibility of Shelters

You have multiple sclerosis. It’s hard for you to walk, but you make it to the shelter and decide you want to stay there to get away from your abusive partner. The shelter says you can stay but has a no narcotics rule. You take prescribed narcotics to treat the extreme pain you experience from your MS. They refuse to make a reasonable modification to their rules for you. So you can get away from abusive partner or you can treat your MS, but not both.

Inaccessible information

You’re blind and your boyfriend is verbally and physically abusive as well as completely controlling. He does not let you have a phone and sometimes he doesn’t even let you go to class. On a day he does allow you to go to school, you talk about domestic violence in one of your classes and different options victims have to seek help but you can’t read any of the handouts. You want to seek help from a shelter, so you skip your next class to go to the school library to google your local shelter before your boyfriend comes to pick you up. Unfortunately the website isn’t accessible so the screen reader can’t read any of the information. You don’t exactly want to ask the librarian to read the information to you either. Why is it so hard for you to seek help?

Communication Barriers

You’re Deaf and you use TTY to call your local shelter. When the person at the shelter answers, they don’t want to deal with TTY communication, so they hang up. You’re upset because you feel rejected when it took you so much courage to finally seek help, but you won’t give up. The next day you go to the shelter for help, but they refuse to get an interpreter so you can communicate with them. You demand an interpreter because you know your rights. You tell them the ADA requires them to provide an interpreter as an accommodation. They finally agree to provide an interpreter during meetings and therapy, but for the other 22 hours of the day you have no access to communication with others. No one else in the shelter knows sign language. You feel so isolated and alone. Maybe it’s better to go back to your partner. After all, he knows sign language. He communicates with you. And he doesn’t always hurt you. Maybe if you go back things will get better? At least you know you won’t be so alone.

Or maybe you have a speech disability. Your speech is difficult for others to understand and often people need to ask you to repeat yourself multiple times in order to get what you’re saying. You don’t mind repeating yourself but most people don’t have the patience to listen to you. Your attendant understands your speech, but your attendant is the one who abuses you. You try to tell others when your attendant is around, but everyone just smiles and nods, pretending to understand you. Will anyone ever listen?

Of course, what if you’re completely nonverbal?

Lack of Understanding

You Don’t Understand That You’re Experiencing Abuse

You have an intellectual disability. Your mom hugs you and kisses and feeds you, but she also yells at you, hits you, and controls everything you do. You know your mom loves you and you don’t like when she hits you and yells at you, but she tells you that she has to yell at you and hit you because you’re a bad girl and she needs to teach you a lesson. You don’t understand that she is being abusive, so you never seek help.

You Don’t Realize Specific Actions Are Abusive

Your husband loves you and he would never hit you. He’s never laid a hand on you. But, sometimes when he’s mad he refuses to let you have your wheelchair. He takes it away from you so you can’t reach it. You end up lying in bed for days sometimes – laying in your own urine because you can’t get to the bathroom. Sometimes you get bed sores from laying so much and twice the bedsores have gotten infected causing you to be hospitalized for days. But that’s not really abuse, right? He loves you. He’s usually very good to you, he just gets frustrated sometimes. It seems like an insult to women who experience real abuse to say that this is abuse. It’s fine.

 


For additional information, please see our article Domestic Violence Support For Women with Disabilities.

#yesallwomen Includes Women with Disabilities

 

This article was written by attorney and advocate Stephanie Woodward. It was originally posted on her blog Ms. Wheelchair Florida 2014 on May 29, 2014. It has been reposted here with her permission.


 

Domestic violence, sexual assault, and rape culture have been getting a lot of attention lately, especially with the #yesallwomen hashtag that has gained some serious momentum. I’m glad that this is on society’s radar right now, because as an advocate for ending domestic violence and rape culture, this is something that is on my mind every day.

Also, as a woman this is something that is on my mind every day. Every day I take steps to protect myself from sexual assault that most men never even think of. Every day I deal with statements and actions that perpetuate rape culture.

So yes, as a woman and an advocate I am glad.

But as a woman with a disability and an advocate for ending domestic violence against women with disabilities, I am disappointed.

I’m disappointed because these conversations about ending the violence, stopping the assaults, empowering women, and all that jazz never include women with disabilities.

This is a huge problem.

Why?

Well, for many reasons, but here’s just a few:

  • Women with disabilities are at least twice as likely to be victims of domestic violence and sexual assault than women without disabilities.
  • Women with disabilities experience abuse that lasts longer and is more intense than women without disabilities.
  • Women with disabilities are less likely to report domestic violence or sexual assault. Approximately 70% – 85% of abuse against people with disabilities goes unreported.
  • Studies estimate that 80% of women with disabilities have been sexually assaulted.
  • One study showed that 47% of sexually abused women with disabilities reported assaults on more than ten occasions.
  • Another study found that only 5% of reported crimes against people with disabilities were prosecuted, compared to 70% for serious crimes committed against people with no disabilities.
  • Women with disabilities are often perceived to be weak, unwanted or asexual, making us more vulnerable to sexual violence.
  • Some attackers have stated that they considered it a “favor” to rape and/or sexually assault women and girls with disabilities because they thought no one else would have sex with us, that we could not have sex otherwise, or they didn’t even view us as human beings.
  • Abuse has a more severe negative effect on the self-esteem of women with physical disabilities than those without disabilities.
  • Many women with disabilities have fewer economic resources, thereby increasing the risk of abuse.
  • Women with disabilities face limited options for escaping abusive situations and accessing battered women’s programs.
  • Women with disabilities are women too. Our voices, our thoughts, our bodies, and our lives matter.

I could keep continuing to list facts for you, but I’d be here all night. No, I’d be here for years. The point is that women with disabilities are women. We are human. We are sexual beings. And we are experiencing domestic violence and sexual assault and we’re experiencing it at much higher rates than any other population.

But nobody is talking about us. Nobody is talking with us.

Problems don’t get fixed if nobody knows the problem exists. By not taking a stand against the violence that women with disabilities face, we are essentially ignoring it.

No, we’re doing more than ignoring it. We are endorsing it.

When women without disabilities don’t step up to talk about and try to stop the abuse that women with disabilities face, they are endorsing that abuse. Just like when men don’t step up to talk about and try to stop rape culture, they are endorsing rape culture.

Just like rape and domestic violence isn’t a women’s problem, rape and domestic violence against women with disabilities isn’t just a problem for women with disabilities. These are both societal problems. Society needs to fix them. Men and women – with and without disabilities – need to work together on these issues.

So let’s start talking about domestic violence and sexual assault against women with disabilities because #yesallwomen includes women with disabilities.

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

Continue Reading Going to College with a Disability

How GimpGirl Works

How do we function as an organization? People often ask about our somewhat unique way of getting things done. GimpGirl Community has been around for almost 16 years now, but because we often operate behind closed doors most people don’t understand how this community works from an “administrative” level.

We are a relatively well-known group in certain circles, and the prevailing stereotype of relatively well-known groups such as ours is that of a well-funded, corporate nonprofit with a full staff who often presumes to know more about the people they serve than the people themselves. I promise you we are none of those things.

Financial Survival

GimpGirl has never been — and never will be — a well-funded corporate nonprofit. We have never been the recipient of any grant, and we do not have a regular source of funding aside from occasional member donations that cover the cost of incidentals like travel and computer equipment. We have always relied on “in-kind” donations of services from supporters (mostly friends of those within our “staff” circle) and individual members. They donate technical services such as server maintenance and computer repair, and various professional services such as editing articles and consulting on the best way to create healthy environments. We also partner with other organizations on services like web servers in order to save money.

Aside from our beginnings as part of a very small nonprofit (which is now defunct), and a brief partnership with another very small nonprofit, we have never been independently registered as a nonprofit. One of the main benefits of being a registered nonprofit is the ability to apply for grants and various other funding. For some organizations, a reliable money stream is essential to carrying out services. However, going down that path also means that a large percentage of human resources must be redirected to continually seeking new and better funding sources.

The U.S. 501(c)(3) nonprofit corporate structure comes with legal requirements, as well as additional provisions required by funding sources – stipulations we are not willing to accept. As women with disabilities, our lives are often subject to the whims of medical and bureaucratic institutions. Our members sometimes deal with homelessness, neglect, abandonment in life-threatening situations, and physical, sexual and emotional abuse. The organizations and bureaucracies that are in place to deal with these situations are often not set up to handle disability needs. As a collective, we have the flexibility to help our members deal with these situations in ways that we would not be able to if we incorporated as a nonprofit.

Human Resources

Even though GimpGirl technically has an internal hierarchy, we often function more like a democratic collective. The hierarchy was established to create a structure to deal with potential conflicts, and to centralize individuals who have clearance to speak for our community and coordinate volunteer efforts. Because we are a community by and for women with disabilities, it is highly beneficial to have a flexible structure that allows individuals to contribute in a way that works for them. Our volunteers not only deal with the barriers that the bureaucracy around disability causes, but they also deal with the complications that many adults deal with – jobs, children, family, relationships.

There are times when we refer to the contributors as “staff,” but we have never paid anyone any amount of money to work for this community. All “staff” hours are donated by individuals, including those who officially have titles such as myself. Our core volunteers also often collaborate with other organizations on projects related to women with disabilities and technology, but they generally do not receive monetary compensation for their efforts even when the project is funded. Volunteers are invited to conferences around the world to represent our community and to talk about the issues we confront, and when we are lucky the organizers pay for travel and accommodations. We are all volunteers working towards a common goal – not because we are paid, but because we are passionate.

Member Participation

The real magic in what we do happens when we bring members together. The women with disabilities that facilitate and participate in this community work together to create the space that makes everything that we do possible. Many members have never had the opportunity to talk to other women with disabilities because of barriers or a lack of people in the local community. A kind of natural co-mentorship forms when you bring people together who understand the lived experience of each other. Our members come from all over the world, and represent a wide variety of different backgrounds and levels of experience. They also have a wide range of disabilities.

Young students come to us struggling with the complications that come with being successful in college to speak to older professionals who have been where they are. Individuals in abusive situations at home come to us to speak with women who have made the transition to their own environment. Women who are pregnant come to speak with other mothers who understand how society treats mothers with disabilities. People simply wondering how to get from here to there to accomplish something they want to accomplish come to ask about accessible transportation. We all have some story or learned lesson that we can share that is meaningful to others.

Involving a wide range of women with disabilities also helps ensure that our community stays accessible to a wide range of people. Our contributors strive to create online spaces that are inclusive to all of our members, because our members make us who we are. Additionally, contributors are all people with disabilities who have their own needs. Instead of thinking about accessibility as a vague idea or a checklist, we think about accessibility as a constantly evolving collective responsibility to work together to make sure everyone can participate. We are successful because we work together with inclusivity in mind from the beginning.

Other Resources

If you have access to an academic library and would like more information about how this community functions, please check out our article in New Media and Society entitled GimpGirl grows up: Women with disabilities rethinking, redefining, and reclaiming community. Everyone can access additional information about this community on this website under the About Us tab, as well as in the numerous articles found here.

Community Liaison Katherine Mancuso and I will also be discussing how our community works today — January 27, 2014 at 6pm Pacific — at the online event Leading Accessible Online Communities. It is open to everyone!

 

— Jennifer Cole, Director, GimpGirl Community

 

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!

Opinion: Adapting Meditation

 

The following article was written by volunteer and member Ricky Buchanan. In the process of learning to meditate, Ricky ran into some complications in terms of instructions geared towards an able-bodied audience and wanted to share the lessons learned in the process of adapting those instructions.


Guided meditation tapes often have directions that can be hard for some people with disabilities to follow. Does this mean you can’t use those tapes, or can they be adapted?

Mostly the only thing that matters in meditation, honestly, is your state of mind. All the rest – physical position, breathing, and most of the things you’re asked to imagine in a guided meditation – is all there to set up an environment that encourages your mind to be meditative.

Here’s some suggestions for adapting guided meditations:

Most guided meditation tapes want you to sit on a straight backed chair with your feet on the floor. This is completely optional – you can sit or lie in whatever way feels best for you, regardless of what the tapes say. It can help your brain if you have a specific position that’s just for meditation because your mind will get used to “I’m in this position so I should feel meditative now” but you don’t have to. If you have a tendency to fall asleep during meditation then sitting up might be easier for you because it’s a lot harder to fall asleep sitting up, but that’s the only advantage to sitting rather than lying down.

If the tape says to pay attention to how a body part feels, or to move it a little, and you don’t have that body part or you can’t feel or move it, then just pick a different part of your body. Something close by will probably work, depending on the guided meditation. Alternatively, try just *imagining* what it might feel like, if you prefer. This might mean slightly moving your knee joint instead of wiggling your toes, or paying attention to the muscles in your shoulders instead of feeling your fingers tingle. Or it could mean imagining your toes relaxing, even though you can’t actually feel them.

If the guidance says to take deep breaths and you can’t control your breathing or it’s inadvisable to take deep breaths then you can just pay attention to your regular breathing. Similarly, any instructions on breathing in or out a certain way, such as “in through your nose and out through your mouth” can just be ignored or you can just breathe more slowly or deeply. You’ll find out what works for you fairly soon.

Instead of paying attention to, say, your tummy rising and falling for breathing you can pay attention to any different place in your body where you can perceive your breath moving – whether it’s your nose, your throat, your chest. Or you can even just put your attention on the synchronised sounds your vent makes, if that works for you.

If the guidance says to pay attention to your whole body, for example to feel yourself sinking into the mattress as you relax, again you can just pick a part of your body that works for you or you can imagine in. You could pay attention to your neck relaxing and your head sinking into the mattress, or you could just imagine your whole body sinking into the mattress and what it might feel like.

One guided meditation series that I’m following started asking me to look at something for the first minute or two of the session, so I’m just “being aware” instead of actually using my vision. This wouldn’t work for a guided meditation that was specifically focussed on looking at things but for one like mine where it’s just a passing section of the introduction it works well.

If you have a lot of pain in a particular part of your body then you might just include that in your meditation or you may want to ignore that part of your body and work around it as described above. Or you might use some combination of these techniques – there are specific meditations which are great for those with chronic pain but it’s also fine to just adapt any other meditation.

If the guided meditation is asking you to imagine a scene and that doesn’t work for you then just adapt it. Most specific things in most guided meditations don’t have to be exactly-as-described to work – if your guided meditation includes a scene of you walking down the beach but you’ve been a long-term wheelchair user it might work better if you imagine wheeling down the accessible promenade right beside the beach. If your guided meditation says to watch the sunset but you’re blind then by all means imagine the setting sun warm on your skin.

You’ll know by the end of the first time you listen to that meditation whether your adaptions worked OK and if there was any issues you can imagine differently. I once mentally “changed” a guided meditation that asked me to imagine carrying a heavy ball by imagining the ball was very light, but the meditation went on to say the heaviness of the ball represented something important. So the next time through I just imagined a heavy ball and a trolley to transport it – imaginations is wonderful like that!!

Most importantly, don’t stress about it! You pretty much can’t do guided meditations “wrongly” no matter how your movements and thoughts do or don’t match what’s on the tape. If something doesn’t work for you then change it around or find a different guided meditation tape, that’s cool too.

Balancing Relationships

This article was originally posted on Yahoo! Accessibility.

In our previous article, Caregivers and Relationships, we gave a very broad overview of managing paid caregivers and various other relationships. Relationships are more than just managing caregivers and other people in your life. In long-term romantic relationships, particularly, there are many factors involved in creating a healthy and safe emotional space to help the relationship to continue. People with disabilities have long been unfairly characterized as being a burden to society, and this characterization carries over into any relationship where there is an expectation of equality. Even individuals themselves struggle to find their own worth and sense of equality within this relationship dynamic.

Everyone has different needs, regardless of disability or ability, and everyone must figure out how to meet their needs and those of their partner in different ways. Unlike the notion of equality, where everything is equal, we prefer the notion of equity, the idea that everyone in a relationship be given fair access to meet their particular and different needs.

Long-term relationships take a lot of work under the most ideal circumstances, and people with disabilities are often beset with complications that are less than ideal. Even with the support of a paid caregiver (or other assistance outside of your relationship specifically for disability accommodations), your partner will probably end up in a position of being a caregiver at some point. Paid caregivers may not show up for shifts or do their job correctly at times. Many of us rely on our emergency support network (including our partners) to get through problem periods and staffing issues. How do we go about keeping our relationships healthy and balanced when one or both (or more) partners has particular needs related to their disability? Our GimpGirl Community members got together and compiled a list of personal suggestions based on what they have learned in the course of their relationships.

Open and Honest Communication

Being open and honest in terms of how we communicate with a partner might seem obvious, but it bears repeating. The importance of communication is noted in every contemporary article written about healthy relationships for good reason. However, when there are additional requirements by one member of the relationship, communication becomes crucial. Everyone in a relationship has to be able to express their concerns and needs, and have those respected by their partner, but more importantly they have to feel that it is safe to do so.

Not only are people with disabilities often socialized to not speak up for themselves, in an effort to “lessen the burden” they place on those around them, but when our partners are put in the role of being a caregiver, they can have feelings of guilt when asserting their own needs. Needs arising because of a disability can often be more immediately obvious, but they should not necessarily be seen as requiring priority. And they may not be as obvious as the person in need might think. Fundamentally, if the person in the role of the caregiver does not assert their own needs in balance with the needs of their partner, the potential for unnecessary resentment is always present. One of the greatest dangers stems from differing expectations and a sense that someone should know something that has not actually been said or explicitly stated. No one should be expected to have to guess what their partner needs or feels.

A simple example of this dynamic: a person with a physical disability really needs help going to the bathroom and their paid caregiver has left for the day. They ask their partner for help, not knowing that they both really need to go to the bathroom at the same moment. Ideally, a brief discussion would be initiated wherein both decide who gets priority in that particular situation. This situation may seem silly, but it is a really common one that arises. Situations like this often can lead to feelings of resentment if not dealt with in the moment through open communication. The most simple, taken-for-granted, assumptions often lead to the greatest conflict. And when one takes the time to acknowledge the needs of others, even when wanting to take priority, there is the greatest chance for open dialogue and sharing.

Sharing and listening to each person’s views on disability and caretaking, and how the views have formed can clear up a lot of the misunderstandings that stem from being confused and hurt by unexpected reactions. This is especially true for friends or romantic partners who come from different backgrounds or experiences in growing up. Plan to have this conversation intentionally at a time that works for both or all of you, and feel free to repeat as necessary.

Another really important conversation to have relates to what protocol to follow when stress levels are high, or you are upset with each other. A couple needs to know how to communicate when there is anger or frustration. When complications arise of any sort, both individuals need to know how to ask for their needs in that moment. If you are in the middle of a fight with each other, and one of you needs help with something that’s really important in the moment (again, like going to the bathroom), how will that be handled in a way that is fair to both of you? What should someone do if they need space, and how will you handle any emergency needs in order to respect that person’s space? How will you support the needs of your partner when you are also frustrated or in distress? These are all questions that can be answered, and should be addressed before the situation arises in order to maintain balance within the relationship.

Getting Support

Everyone needs support, and no one is capable of independently handling everything life throws at them. We all live within the massive support structure that is our culture and society.  Whichever member of a relationship has a special need, sooner or later both partners will need assistance and support from paid professional caregivers, and emotional support such as counselors or friends. Getting meaningful input, support and an external perspective from others is vital in keeping a healthy balance in all relationships. One important thing to remember in relationships where disability is involved is that ideally these outside supports should be peers or professionals who have experience with this type of situation. Too often people who have no experience with this type of situation have extreme biases that do not reflect the reality of the lived experience that those of us with disabilities have.

It is still a commonly held view in society that people with disabilities are a greater burden than others. Even if someone does not say this overtly, it is so pervasive a thought that it influences the opinions of many as to what is happening within your relationship dynamic. Most people will see the person with the most apparent disability as the greatest receiver of effort and energy in the relationship, even though that may not be the case at all. Everyone has both needs to be met and assets to share in a relationship. Just because someone has a very obvious physical or social need, such as requiring help going to the bathroom, or functioning in a social situation, does not mean that they do not more than make up for what they appear to lack in some other part of the relationship, perhaps in their financial sense, wit, insight and wisdom, compassion and humor, or skills with non-physical or social contexts.

Perspective

Physical help is often the most overt form of assistance one might require, but the support lent by both people must be understood and honored to maintain a healthy balance within the relationship. This is even important for the person with greater apparent needs. It can help him or her with self esteem and related issues that often stem from viewing him or herself as constantly receiving and not contributing to the relationship in equitable proportion. It is important to remember that this is a commonly held societal view, even when not promoted by those in a relationship. Most people with disabilities are steeped in this mindset if they are raised with a disability, and have been taught to believe that they are always the recipient of charity.

Keeping a relationship balanced requires that we strive to maintain a perspective regarding the help that both parties provide, and the beneficial impact of that balance on the quality of life for everyone. Human relationships are complex, and all healthy relationships require a balance of give and take. Collectively discussing what energy each of you is putting into the relationship and how you both add to a healthy balance will help keep perspective in the long run.

Mindfulness

Try to be mindful of the impact that physical states have on mental and emotional health. The fallout from stress caused by crabbiness from pain or exhaustion can have unintended and very intense side effects for both people, and your own frustration borne of discomfort can have unintended consequences. Also be mindful of panic triggers2 that both people have.

If there is a stretch of time where any partner has greater needs than usual, or has reduced outside support for those needs, be mindful of how that additional stress is affecting others, whether they are directly acting as a caregiver or not. Be gentle with each other. Life and love can be hard enough without any complications. Nobody is perfect or should expect perfection in another human being.

Conclusion

How are these thoughts different from any recommendations for a healthy relationship? There is little difference. Relationships are always as fraught with challenges as they are with joys. However, people with disabilities are often socialized to think of themselves as being a burden and taught to not speak up for themselves. Also, because of the complications involved in managing accommodations and services, both people with disabilities and those around them can put too much emphasis on those needs. Everyone has needs and countless successful relationships have proven that those needs can be balanced when everyone understands the strengths of the individuals involved.

What has your experience been? Are there any lessons you would add to this list?

Footnotes:

1 Caregivers (also called carers or personal care assistants) perform many different duties depending on what is needed by an individual. For people with physical disabilities, this can include help with “daily living activities” (DLAs) such as bathing, dressing, and eating, as well as help with cleaning the house and getting to medical appointments. For people with other types of disabilities (though the individual may be called something different depending on the situation), the needs are very open-ended, and can extend to whatever a person needs to engage with the world to the greatest extent possible.  Ideally, as we have written about in previous posts, the caregiver (or other type of assistant) is predominantly an individual who is not in any other type of relationship with the person they are employed to support. However, complications arise when a romantic partner is the primary caregiver for their partner.

2 A trigger is something that causes an emotional reaction in someone. A trigger can be a touch, a sound, certain words, behaviors, or any number of events or situations which cause someone to either recall traumatic memories or just react with panic or some other emotional response. Sometimes people know that they have triggers, and sometimes they do not. However, learning what your triggers are and those of your partner can be profoundly illuminating.