#CripLit Twitter Chat: Resistance Through Writing: Dec 4

Author Nicola Griffith and founder of the Disability Visibility Project Alice Wong will be hosting the fourth #CripLit twitter chat on Sunday, December 4 to discuss issues important to disabled writers of all types. Topics will include using writing as a form of resistance, increasing the visibility of your work, self-care and community.

When: Sunday, December 4 at 4p Pacific/7p Eastern
Where: Twitter using hashtag #CripLit (or you can follow along without a Twitter account on Twubs)

For more information, visit Nicola Griffith’s #CripLit post.

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.

The New Year

When most people think of New Year’s resolutions, they picture easily made and easily broken promises. I like to think of the New Year as a time for reflection and self-guidance — a time to look back on the year behind us and what we have learned from those experiences, and a time to look forward into the new year to see how we can use those lessons to get closer to our goals.

Most of the GimpGirl regulars know that, for me, the last year has been one filled with a great deal of difficulty. The summer saw a sudden end to my long-term relationship, which sparked an interstate move and an endless cascade of problems with arranging social services and dealing with various other issues, on top of continuing school and my work here at GimpGirl. It has not been easy, to say the least. At times it looked as if I would end up in a group or nursing home on a long-term basis, something I fight very hard to avoid. It has been soul crushing, heartbreaking, and has tested every ounce of my somewhat renown tenacity.

As a disabled disability advocate, I feel it is important to share this experience. Sharing experience is a big part of how our community learns from each other. I often encounter assumptions that advocates don’t experience the same kinds of struggles and barriers that many other people do. We do, and it is just as difficult for us. We also know that what we do for ourselves affects those that come after us.

I have learned so much in the last six months. More than I ever thought possible. I have learned even more about navigating the system, what housing options are available to people with disabilities, what specific terminology to use when being assessed for caregiver funding, federal laws and statutes, and a multitude of other things. What I was reminded of more than anything was to stick by who I am as an individual. I am worthy, and the goals I set for myself are worthy. It was a reminder to not let anyone change me, because who I am is pretty awesome even if not everyone thinks so. It was also a reminder of how vitally important having a community is. Without my GimpGirl family – all of you amazing women who understand what facing these struggles is like – all of this would have been unbearable. When I was tired, these reminders would echo through my mind, keeping me from giving up when everything was telling me to.

As I go forward into the new year, I will take those lessons with me into my own life and in my work with GimpGirl. I am already seeing the light at the end of the tunnel, but I know that in order to fully realize what I want from my own life I will face many obstacles in the months to come. However, having looked back at the previous year, I know that I can face it. I know that the struggle is worth it. I know that I am worth every bit of energy I put into myself and my dreams. I believe in myself, probably more than I ever have after facing all of this.

I look forward to the year ahead. I look forward to working with other volunteers to make GimpGirl an even better community, with more community-created content and outreach. As we begin our 14th year together, I look forward to getting to know all of you even more. I am grateful for every one of you.

— in solidarity… Jennifer Cole

Social vs Medical Model Evolved

This article was originally posted on Yahoo! Accessibility.

Models Of Disability

Disability activists and advocates have been trying to frame disability and surrounding issues using a social model of disability since at least the 1980s in an effort to distance discourse from the (still) predominant medical model that rules many of our lives. This switch in models was to frame disability in a way that made it clear where many people face barriers and how those barriers can be addressed. However, the vast majority of people have still never heard these terms or understand the implications of these thought frameworks. Of those who have, even within the disability community, there is a sense of division between those who embrace the social model and those who don’t feel it is an accurate description of their reality. So, what are these models and how can we bridge the gap?

Medical Model

The medical model of disability focuses on the impairment (physical/health/mental/etc.) as a person’s barrier to a “normal” level of functioning in their daily lives and in society. This model focuses on curing the cause of the impairment or correcting that impairment through use of equipment, medication, etc. in order to enhance the individual’s quality of life. This has long been the most commonly used model by the medical field, as well as many other organizations. It is by far the one that most people are familiar with and are used to working within. (For more information, see the table below.)

Social Model

The social model of disability focuses on a broader view of the existence of barriers as mainly stemming from a social construct of disability by society in general. In this model, people with disabilities would largely have no barriers if people took into consideration the vast diversity that exists within humans. If we did not use stairs in architecture, people in wheelchairs would no longer have the barrier (and the same could be true for someone pushing a stroller or a dolly stacked with heavy boxes). If government and society supported adequate support services such as funding for caregivers and medical coverage, our individual impairments would no longer be a barrier to engaging in society and our lives. This model has roots back to the 1960s civil rights movement, but has been largely used by disability activists since at least the 1980s. (For more information, see the table below.)

After reviewing the definitions of these two models on the Spina Bifida Support website (see definitions), our community members began a discussion on how they felt about these models and how it applied to their lives. The following is one outcome of that discussion: Ricky Buchanan’s opinion on how these models could be integrated to more accurately describe her experience. Many other members felt this perspective was worth sharing.

The Integrated Model: An Individual’s Perspective (section by Ricky Buchanan)

There is no denying that the creation of the social model of disability has helped a lot for changing/raising disability awareness in the past. At the time we needed a polar opposite to persuade people to move away from the purely medical definition of disability. However I believe its job is done (to the extent it can be done) and we can now most usefully look at models which integrate the best and most relevant aspects of both the social and medical models.

I see the social model and the medical model of disability as ends of a spectrum – the medical model pretty much said “everything about disability is intrinsically negative” and the social model contradicted that with “nothing about disability is intrinsically negative”. I think that the truth, as usual, is somewhere between the two extremes – as a person with a disability, I do believe that some things about my disability are intrinsically negative to me and no amount of environmental adjustment will help with them. I find that things like pain and excessive fatigue come under that category – these things affect me even when I am not doing anything at all and it is very hard to find any environmental changes that help with them.

So although I believe in the social model as a whole, some aspects of my disability really do fit best under a medical model. I believe very strongly that each individual must decide for themselves which aspects, if any, of their self they would prefer to view under that medical model.

MEDICAL MODEL SOCIAL MODEL INTEGRATED MODEL
Disability is a deficiency or abnormality. Disability is a difference. Disability is a difference.
Being disabled is negative. Being disabled, in itself, is neutral. Being disabled, in itself, is neutral. Specific attributes of a disability may be viewed as negative by the vast majority of people who deal with them (e.g. pain, fatigue, depression) but this distinction can only be made by those living with the attributes.
Disability resides in the individual. Disability derives from interaction between the individual and society. Disability derives primarily from interaction between the individual and society but also from negative attributes of disability present within the individual.
The remedy for disability-related problems is cure or normalization of the individual. The remedy for disability related problems are a change in the interaction between the individual and society. The remedies for disability related problems include (a) a change in the interaction between the individual and society, (b) neutralizing or ameliorating negative attributes as far as possible.
The agent of remedy is the professional. The agent of remedy can be the individual, an advocate, or anyone who affects the arrangements between the individual and society. The agent of remedy can be the individual, an advocate, a professional, or anyone who affects the arrangements between the individual and society or who is able to neutralize or ameliorate negative attributes of disability.

Origins of an Integrated Model

This concept of integrating models of disability is hardly new, but most of this work seems to have been done by academics in various fields, and has unfortunately not trickled down to individuals even within the disabled community.

Carol Thomas, a professor/writer in the UK who specializes in disability studies and sociology of health and illness, wrote about a “social relational model” that defines “disability” as a result of people with impairments being restricted by society from participating in an activity (2004). However she also mentions a concept that she calls “impairment effects.” For example, if an activity we wished to do had provisions in place to enable access for us, effects of our impairment, such as emotional and physical pain, still have the potential to prevent us from taking part in activity.

If this kind of social relational understanding of disability could be adhered to within disability studies, that is, if the commonplace view that disability equates with restrictions of activity could be broken away from, then there would be no need for futile and time-wasting disputes about whether or not impairment or chronic illness cause some restrictions of activity. We can say, ‘Yes, of course impairment causes some restrictions of activity—but these are not what is of interest in studying and combating disability’. Disability is a form of social oppression on a par with other forms of oppression in our society associated with gender, race, class, and sexuality. (Thomas, 2004)

Tom Shakespeare, a geneticist and sociologist from the University of Newcastle, and Nicholas Watson, from the University of Edinburgh, also write about using a “critical realism” framework to view barriers:

Experiential, impairment is salient to many. As disabled feminists have argued, impairment is part of our daily personal experience, and cannot be ignored in our social theory or our political strategy. Politically, if our analysis does not include impairment, disabled people may be reluctant to identify with the disability movement, and commentators may reject our arguments as being ‘idealistic’ and ungrounded. We are not just disabled people, we are also people with impairments, and to pretend otherwise is to ignore a major part of our biographies. (2002)

Shakespeare and Watson ask: “Where does impairment end and disability start? … Impairment is part of our daily personal experience, and cannot be ignored in our social theory or our political strategy.” (2002)

Conclusion

This debate is definitely not new, and has been at times contentious among those feverishly working to further disability rights and access. Often, those outside academic and activist circles are largely unaware of this debate. However, in order to come together to further disability rights and awareness, some believe we need to change the discourse.

What do you think? How can we take these models of disability and make them more accessible to the common person? How can we involve more people in affecting rights and access? Please comment below!

Sources:

Shakespeare, T. & Watson, N. (2002) The social model of disability: an outdated ideology? In: Research in social science and disability, volume 2, pp. 9–28.

Thomas, C (2004) How is disability understood? An examination of sociological approaches. In Disability & Society, Vol. 19, No. 6, October 2004 pp. 569-83. Taylor & Frances Ltd

Remembering Laura Hershey

 

[This post is also on our LiveJournal community]

Laura Hershey was an internationally known American writer, poet, activist, consultant, partner, mother and woman with a disability, based in Colorado. She passed away suddenly on November 26, 2010, after returning from a family vacation.

She had just written about her trip here: The Good and Bad of Gratitude

Some tributes:

Many will remember Laura Hershey in the days, months, and years to come, and learn from her work, as we have.

Women with Disabilities in the Modern World: A Brief Introduction

This article was originally posted on Yahoo! Accessibility.

The modern web is full of great advice for the modern woman. There are lots of lifestyle sites to be found, a plethora of “mommy blogs”, and a cottage industry of communities for women from all walks of life, like our friends at the all-encompassing BlogHer.com.   There are countless campaigns promoting issues specific to women’s health and wellness, self-esteem, human rights and abuse, and in this age of social media, they are able to receive the exposure they well deserve.

What many don’t realize as they seek advice, share stories, commiserate, and fund raise with other women is that (at least in the United States), as many as 1 of 5 of their fellow moms, aunts, sisters, colleagues, and friends is a woman with a disability.

Why would they necessarily realize it? Many of us who are women with disabilities are  busy enough just trying to live our lives the way any woman would, with the same stresses, stories, and successes as our non-disabled neighbors.  We are similar in as many ways as we are different, so self identifying as a woman with a disability doesn’t always come up.

And yet, there are some important ways in which we’ve discovered attention should be paid to the lives of women who also happen to have disabilities.  As women with disabilities, we’ve got a responsibility to ourselves, our loved ones and our communities, to understand some very real dangers that come with the territory of being who we are. People who don’t have experience with disabilities in their lives should also be aware of what is out there, because without allies, there will never be enough awareness to change some of the disturbing facts we’ve discovered over the years.

Here are just some of the US-based statistics we’ve encountered:

  • At least 20% of U.S. women have some kind of disability. Women with disabilities face the same issues all women do, but generally at higher rates and with additional barriers.
  • Women with disabilities struggle with poverty, as do many women in this world, but more than 2 1/2 times as many live in poverty as women without disabilities. That is more than a quarter of all women with disabilities, which is a rate higher than men with disabilities in every age group according to the 2003 U.S. Census.
  • According to Smith and Ruiz (2009), studies have shown that women with disabilities are more likely to have healthcare coverage (92.1% vs. 86.9% women without disabilities). However, women with disabilities are much less likely to gain access to healthcare services due to additional costs, limitations in coverage, and inaccessibility
  • In a Center for Research on Women with Disabilities (CROWD) study on access to healthcare, nearly 1/3 of women polled stated they had been denied access to services solely because of their disability even though it is illegal to do so.
  • The rate of abuse of women with disabilities is similar to that of women without disabilities (52% over the lifetime of a woman). Rates of abuse can be drastically higher among women with certain types of disabilities. If you take women with disabilities as a whole, however the abuse tends to be more frequent, over a longer period of time, and by more people within that individual woman’s life. To women with disabilities abuse is not only physical, mental, and financial. It also includes prolonged lack of assistance with activities of daily living like eating, bathing and using the restroom (neglect), and withholding assistive devices (walkers, wheelchairs, etc.) or medication.
  • Women with disabilities also have fewer opportunities to leave an abusive situation. Medical and mental health professionals frequently do not understand the breadth of abuse, nor do law enforcement officials and social workers involved in providing assistance and refuge. Studies by CROWD show battered women shelters do not provide adequate disability-related support services (other than support for mental illness) that would allow a woman with a disability to access these services (such as attendant care, and other supports needed to function and deal with the trauma of abuse). There is also a severe lack of outreach by shelter programs geared toward women with disabilities, even if accessible services are available.

Women with disabilities often face these challenges in silence and isolation.  Disbelief that such abuse and discrimination are possible, failure to recognize that people live at the intersection of class, ability, and gender oppression, and lack of education about the issues are prevalent even among dominant feminist and disability communities.

What else have we found out? Despite all of these challenges, or maybe because of them, women with disabilities are vital individuals that have the ability to create not only their own life and identity, but also have much to offer the world.

These statistics, and even more than that, the conversations and stories that we share, teach us that there is a wealth of experience among women with disabilities across age groups, cultures, and many other identifiers. Along the way, we discover differences, as well as some common ground among many of of the women we’ve encountered:

  • Many of us have the ability to see the world as both the caregiver and receiver of care at a younger age, giving us a broad understanding of the cycle of life not understood by many people until the end of life.
  • We have the ability to see our bodies as unique and powerful, as well as see the uniqueness in other bodies that society deems unworthy.
  • We can also, if we so choose, sexualize our bodies despite the dominant voices of society telling us we are unattractive, undesirable, and incapable of sex or being sexy.
  • We can give birth and raise children despite medical professionals and society telling us it is impossible.

Our negative statistics seem to go on and on despite the data being incomplete, while the positive discoveries never seem to be enough at times. This is why as a group, we challenge ourselves to face these realities head-on. To admit them to ourselves, and to share them with others. We encourage women with disabilities to educate themselves, be proud of who they are and how far we have come, and also to fight against stigmas and statistics that follow them. There is a delicate balance between living our lives and fighting for them, and too often, too many of us are fighting. In a more perfect world, this balance would be different but for now we need to focus on the commonalities we have, and stick together through the fights we must face, as well as the great joys in life we share.

Source material: Sunday, November 22, 2009 – Virtual Praxis II – Women with Disabilities Event Resource