#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?

 

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.

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

When to Say Goodbye to an Aide

 

In a previous article, we talked about how to find and hire an aide. Now, we’re going to discuss when and how to end that relationship when it has reached a natural conclusion. Knowing when to end a good working relationship can be tricky.

Being an aide should be really fun — and professional — for both you and your employee. However, there is an arc that most working relationships follow. If you hire people who are right out of college, they will inevitably want to leave to pursue their careers. Even aides who have been in the industry may need to move on for various reasons.

If they are having a good time at work and have a steady job, an aide may not know how to voice their desires to leave. Here are some changes to watch for that may indicate an aide needs to move on:

Lack of Energy. Everyone has days where they feel tired, but if your aide starts coming to work on a regular basis without enough energy or zest for the job, it could be a sign that its time to move on. This is especially true if he or she had a lot of energy and then suddenly doesn’t.
Moodiness. If your aide suddenly gets annoyed at little things, it’s a sign that they are not happy at the job.
Calling Out Sick More. Again, everyone gets sick once in awhile. If your helper starts calling in a lot (especially with no particular health reason), that is not a good sign.

How do you address this? It’s not fair (especially if you and your aide have had a good working relationship) to fire her or him without discussing your concerns. Your employee might have a legitimate reason for his or her change in attitude that is unrelated to your working relationship.

Here’s an example of a conversation you might have with your aide to voice your concerns:

You: Hey, so I want to talk about our working relationship. I have noticed you might not be as into the job.
Aide: What do you mean?
You: I have noticed your energy at work has not been as much as it previously was. I don’t know if you are having extra stress outside of work or something, but I just wanted to bring it to your attention.
Aide: Yeah, I’m a little more stressed. I’ll make sure it doesn’t bleed into my work now. Thanks for bringing it up.

It’s up to you if you want to give them another chance. If you enjoy the working relationship, its worth giving him or her a week or two to see if he or she improves, especially after you voice your concern. If he or she doesn’t improve (or only improves for a few days), its time to part ways.

Here are a few tips for how to bring up that you need to part ways:

Be Honest! Explain what you are seeing and how you think it shows that he or she needs to move on.
Use “I” Statements. This sounds cliché, but people will listen to your concerns better if you don’t say “you are.” Observations are better phrased starting with “I feel” sentiments such as: “I feel like our working relationship has changed.” This helps avoid hurt feelings and keep the conversation professional.
Use Email (if possible). That way, you can get everything out without being interrupted. Once your aide reads and digests the email, you two can have a discussion.
Remember, It’s Ultimately Your Decision. If you still feel like its time for her or him to move on, say it! You are the boss, and if you feel like the job is not being done correctly, you should fix it.
Share Positive Feedback. Be sure to praise her or him for the history of good work and assure him or her that it’s not personal. People might feel you just don’t enjoy spending time with them anymore and you should emphasize that is not the case.

Here’s an example of a conversation you might have when you have to let him or her go:

You: So I know I gave you two more weeks to improve your work performance, but I feel its time to part ways. I feel that this job is not the right fit for you anymore. I really enjoyed working with you and I think you are an awesome person. I will of course give you a glowing recommendation for your future employers. This is not personal and I really thank you for all the work you have done.
Aide: I’m sorry to hear that, but I understand. Do you want me to help you transition to a new aide?
You: That would be awesome, thanks!

(Note: Not all conversations will go as smoothly, so be aware of that)

If you do let them go, you should be prepared if he or she doesn’t want to help you transition to a new aide. Firing can be hard to take, especially when you have to work so closely with your boss, so have a back-up plan for help so you don’t get stranded. Hopefully, your aide will understand and help you transition to a new one.

Also, be sure to mention that you would provide references for them and how awesome they have been. These kinds of conversation are inherently awkward and uncomfortable, but it gets easier the more you do it.

Do you have any other suggestions on when and how to say goodbye to an aide? Feel free to comment below!

Hiring Aides

by Eva Sweeney and GimpGirl Community

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


Title: Live-in Secondary Caregiver (Independent Provider)

Start Date: June 15, 2012

Length of Job: Summer/2.5 Months (approximately)

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

Job Contact: First Name, Email Address

Requirements:

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

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

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

  • Any gender is welcome to apply.

  • References are required and will be checked.

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

Job Duties:

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

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

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

Note:

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


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

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

Domestic Violence Support for Women with Disabilities

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

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

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

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

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

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

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

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

Bibliography

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

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

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

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

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.

Caregivers and Relationships

This article was originally posted on Yahoo! Accessibility.

The most common question we hear from younger women with disabilities is how to manage paid caregivers (also called personal care attendants or carers) in the context of some type of relationship. Often this working relationship happens in the same home that family, housemates and romantic partners also live in. How do you maintain your close, personal relationships while managing a paid caregiver full or part time? Keep in mind the following observations are not from professionals, but collective perspective of a group of women with disabilities who have had a lot of personal experience balancing caregivers and relationships.

There have been several books written on this subject, but often the key to finding the answer is simple: You, the adult receiving caregiving services, are the boss that must manage your working relationship with your caregiver in a professional manner. We are not advocating you treat your caregiver poorly — far from it! A clear, pleasant, professional relationship will benefit you both in the long run.

However, it is important that you familiarize yourself with your rights and responsibilities both with your government and any other agencies that might be involved. Beyond rights and responsibilities, defining and enforcing the professional boundaries of your relationship with your caregiver is entirely up to you! Not your caregiver, parents (if over the local age of consent), partner, spouse, agency or housemate — you. Developing the skills to communicate with your caregiver will allow you to guide this working relationship.

The following sections build on each other. What is true for making one situation work is often still applicable for other situations. We recommend you read the entire article in order.

Friends and Housemates

Living in a home with unrelated housemates or friends is probably one of the easiest situations in which to manage the balance between managing paid caregivers and personal relationships. Generally, you and your housemate will have separate “households” (occupied space, and financial and other personal responsibilities) and shared spaces would be areas such as kitchens, laundry facilities, and bathrooms. You may also share a bedroom with separate beds, and this does add some privacy challenges (which we’ll address later on under “Spouses or Romantic Partners”).

In this situation, as long as your housemate knows that a caregiver will be present in the home, your main concern is going to be agreeing on a schedule for shared spaces that you can all stick to. This may seem too rigid for some, but tempers quickly flare when these shared resources are not available when needed. Imagine that you and your caregiver are working together to get you showered (a task that can take over an hour) and your housemate has 30 minutes to get out the door to work. You are probably going to have a pretty grumpy housemate on your hands who feels that he/she is being disrespected.

Schedules also need to be flexible at times. What if you have a hot date and need to wash your favorite outfit the day your housemate usually does her/his laundry? Just be sure to ask for a change as soon as you know one is needed. The same goes for your housemate too. Respect goes both ways!

You will both also need to agree on how shared resources are handled. Is food and laundry soap shared or separated? Whatever you agree on, be sure your caregiver is well informed and respects the boundaries you and your housemate have agreed to. If you do decide to separate resources, try labeling things to make it crystal clear what your caregiver can and can’t use. This will reduce stress on both your relationship with your housemate and your caregiver. Remember that, to your caregiver, your house is a foreign environment and no one has the ability to recall every single detail they are told. If mistakes still happen, ask your caregiver to check with you before using any product.

If any other concern comes up between your housemate and you, deal with it at the time and be sure to make the newly agreed upon boundaries clear to your caregiver as soon as possible (as well as any new caregiver you work with). Again, you will need to take control of managing your caregiver as their behavior and adherence to boundaries reflects upon you in the eyes of your housemate.

Family

What if you live with your family of origin? The following observations predominantly refer to adults receiving caregiving services as parents are still legally responsible for your care until the local age of consent (18 in the United States). Ideally, parents will encourage their children with disabilities to start taking over responsibility for managing caregivers after they reach at least age 15 so that the child is prepared for independence as an adult.

Some people with disabilities continue to live with their parents or siblings as adults, or circumstances force them to move back in to family homes some time later in life. This situation can often lead to conflicts that mainly stem from a lack of clarity about boundaries in your personal relationships with your family (on top of all the issues with housemates mentioned above).

When continuing to live with your family of origin past the age of consent, a major shift in the relationship should ideally happen when you reach the age of consent — you should start taking full responsibility for your services, finances, and life in general, and your parents should not only let you do so but encourage you to do so. In other words, you are now an adult and should both view yourself as one and others should view you as one as well.

This is a huge shift for parents who have raised you from birth and for you who has been their child for many years, and it often causes conflict that affects your ability to effectively manage your caregiver in a way that works for you. Also, you are still living in someone else’s house (unless your name is on the lease as well) and to some degree you still need to follow general rules that your family has set for their property or rented space. This does not mean that they have the right or responsibility to tell your caregiver what to do or in any way manage your caregiver for you. Like anywhere you live, you need to communicate the rules of the property to your caregiver and make sure that they are followed.

Some people rely on a parent or relative as their caregiver, full or part time (for personal reasons, such as living in a rural area, health reasons etc.). In this situation, you should still be able to own your decisions independently (such as having management over your life and finances) as an adult in order to maintain a healthy relationship with your family. Communication and mutual understanding and respect is important. You must be able to ask a family member if you would prefer them to do a task an alternative way or tell them if you are uncomfortable with something. Again, the choices must be yours.

Another concern that comes up in this situation stems from a lack of clarity about who your caregiver reports to. It needs to be made clear that your caregiver reports to you and not your family. An example: You request that your caregiver wait out in the other room while you and your partner have sex. Your caregiver is highly uncomfortable with this request for their own personal reasons, and tells your family what you are doing. This action on his/her part is both a highly unprofessional violation of your privacy as an adult and potentially illegal depending on the situation.

Spouses or Romantic Partners

Living (and sharing a bedroom) with some type of romantic or sexual partner shares a lot of functional similarities with living with a housemate, only the bedroom also becomes a shared space and the personal relationship you are balancing has added complications and privacy issues. However, you still need to discuss all of the same boundaries, house rules, responsibilities and schedule with your partner, and then communicate those to your caregiver.

Keep in mind that unless caregivers are paid privately, they are probably not allowed to do any household tasks or provide assistance for your partner, or any other member of your household.
The division of household chores and responsibilities, such as laundry, cooking, cleaning, finances, and other concerns, should be discussed in advance among household members, so that everyone knows who is responsible for a particular household task. Asking caregivers to do more than they are being paid for leads to an awkward working relationship and potentially the loss of a caregiver.

The discussion with your partner also needs to include a frank conversation about privacy concerns. Some questions to consider together: Are you going to schedule your caregiver hours so you can have regular alone time with your partner? What boundaries are you going to communicate with your caregiver if they happen to arrive while you and your partner are still in bed or undressed? If you have 24 hour caregiver services, how will you handle setting boundaries with them when you and your partner want to have sex or just talk by yourselves? If your partner is still responsible for some part of your personal care, how are you going to arrange for them to have his/her own private mental health time if it is requested?

A note: Even though there are many people who act as a caregiver for their partner with a disability, we do not recommend that you solely rely on your partner as your primary caregiver if at all possible. It not only is incredibly stressful on your partner and your relationship, but it forces you both in to a dual relationship that gets very frustrating. In a working relationship with a caregiver, you can ask for your care and household duties to be done the way you want, at the schedule that works for you because you are managing the caregiver and they are there solely to assist you. If a caregiver doesn’t work with you in a way you like, you can fairly easily find a different caregiver to work with. Treating your partner this way often leads to conflict because there is generally an expectation of equality in your relationship. Your caregiver can also deal with potentially unpleasant personal care tasks that you’d rather your partner not be responsible for. Working with a separate caregiver gives you your own mental health time and more authority over your own life. Additionally, over time this dual relationship can lead to a shift in how your partner and you view each other, your sex life, and your relationship.

Conclusion

This is nowhere near an exhaustive discussion of balancing caregivers and personal relationships, but is meant as a summary of commonly heard concerns and our collective, unprofessional opinions on these issues. Remember: Balancing your life and managing your caregiver and personal relationships is up to you, the person with the disability receiving care.

Can you think of other related issues or concerns? Have an opinion or story to share? Feel free to comment below!

Privacy Issues Continued

This article was originally posted on Yahoo! Accessibility.

In our last post — Privacy, Women with Disabilities and Online Space — we discussed online privacy issues for women with disabilities, as well as some of the things we do to address them as a group. Though it is impossible to summarize all privacy issues people with disabilities face, our team thought it was important to look at privacy through a broader scope. Invasions of privacy are a constant and pervasive part of the experience of having a disability, for many people.

To recap our last post, most online privacy issues are related to creating identity. The Internet has some ability to “normalize” people with disabilities and allow them to disclose whatever information they want when they are ready. If someone is uncomfortable with their disability, they may have no need to disclose their disability online to have a place where they can be free of stigmas that may be difficult off-line. Conversely, if someone is totally comfortable with their disability, they can be totally upfront about it online in order to reach out to others in the disability community. People have different expectations of what privacy means online, but the ability to control what information is disclosed can be a powerful experience that many people with obvious disabilities ordinarily wouldn’t have the freedom to do. The same could be true of gender or any other identity. People can experiment with what they disclose online in ways that feel safe to them.

What we Missed in our Last Post About Privacy Online

Devotees

A big issue with privacy online we didn’t highlight in the previous post was devotees (people who fetishize disability or associated adaptive equipment such as wheelchairs or canes). There are different camps of thought about devotees in various online communities, though we as a group do not think it is healthy to expose our members to these individuals and do not welcome them in to our spaces. However you feel about them, they are very present and numerous online, particularly if you disclose that you are a woman with a disability. They friend you on Facebook on a daily basis. They frequent disability focused chat rooms. They visit disability spaces on Second Life. They ask inappropriate questions, make lewd comments, and generally treat you like a sexual object. It feels pretty creepy and dehumanizing to most women, and it is hard to escape. Many people develop defense mechanisms to deal with devotees, like asking leading questions when meeting new people online in order to get a better read on their intentions. Most devotees are pretty obvious about their goals. However, some of them are more subtle so can be harder to read, particularly as many people with disabilities are socialized to expect people they just meet to ask really personal questions that others might find rude as a conversation opener (which we go in to more later).

CAPTCHA

Additionally, some of the ways some companies provide accommodations for inaccessible websites can also violate privacy. Instead of offering accessibleCAPTCHAs (those scrambled letters and numbers you have to type in when creating an account) that people using screen readers can utilize, some companies require those users to call in to verify their account. Sadly, free, accessible options to use instead of CAPTCHAs are readily available.

A Larger Picture of Privacy Issues for People with Disabilities

The conference we took part in (PrivacyCampTO2) predominately focused on online privacy, so our conversation started there. People had a lot of feelings about that topic, but also had a ton of things to say about privacy for people with disabilities in general. Not surprisingly, as the very nature of disability can involve a lot of people in your personal space on a fairly regular basis. Caregivers handle your personal body. Medical professionals have you in all kinds of embarrassing, dehumanizing positions in those not quite big enough to cover your behind gowns. You may have to rely on others to help you read or otherwise access private or embarrassing information. (Try shopping for the right condoms on your own when you can’t read the package!) To some degree, most people just acclimate to the constant barrage of invasion of privacy. Particularly if you are raised with a disability, this can lead to both an altered expectation of privacy and a heightened appreciation for the precious little privacy you get.

Invisible or Hidden Disabilities

Even people with more invisible or hidden disabilities have fairly constant issues with privacy, on top of ones already mentioned. Because of stigma and fear of discrimination, some people with non-obvious disabilities may choose to not disclose their disability unless absolutely necessary. Knowledge of a disability can affect how professors treat you, how likely potential employers are to hire you, and how new friends view you before they get a chance to know you as a person. However, people often find full disclosure out of their control. Even simple gossip about someone’s disability can put that individual in the position of having private information made much more public than they intended.

Random Strangers

For reasons we will not speculate on, random strangers that people with disabilities encounter often feel it is their right to immediately know really personal information like diagnoses, health status, and any host of other information. Most people will answer to be polite, but think about it: do you normally go up to strangers and start off a conversation with asking highly personal questions? Pregnant women often report this same experience with unknown people invading their personal space (touching their belly, etc.), asking really personal health questions, and assuming what emotional space they are in. It is a common experience of many people with disabilities for the entirety of their life (or disability if it is not life-long).

Caregivers

Unfortunately, that same lack of privacy can often extend to known people as well. Most people report experiences of an extreme lack of autonomy when dealing with caregivers and parents (of children over 18 in particular). Many people have probably experienced trying to get a little private time with that special someone as a teenager, but people with disabilities often stay with their parents longer than others might for practical concerns related to independence. When you add caregivers and nurses to the mix, it can be really difficult to get the privacy needed to explore your very normal sexuality. One person even reported that his nurse was keeping logs of when his girlfriend visited to show to his parents (even though he is an adult), and that the nurse kept barging in to his room despite being asked to wait in the other room. They eventually just locked her out and called her supervisor. This is an unfortunately common tale.

Even if caregivers are respectful, the very nature of the relationship requires a great lack of privacy. That person often knows every intimate detail of your life, like it or not. They often know financial information (though most keep that as private as possible), when you are on your period, how you vote and when you have sex. It requires a caregiver very dedicated to professionalism to keep that information to themselves. The information they aren’t required to meticulously log in your file, that is. Anyone with a government-funded caregiver has their life logged in great deal. How many times a day do you go to the bathroom? How long does it take you to go to the bathroom when you go? How long does menstrual care take you each month? These are standard questions you have to answer (both on forms and in an interview with a government employee) in order to qualify for caregiver and other government funding.

In the United States, some parts of HIPAA were intended to ensure patient privacy, which is a good goal. However, most people have not seen improvements in privacy in ways that are meaningful to them. Mostly, the largest outcome of it has seemed to be making the whole medical process even more complicated, as if the endless paperwork shuffling and constant checking in with a team of medical professionals wasn’t complicated enough.

Most importantly, we discussed that privacy means vastly different things to different people. Some want more, others less. Some know a lot about privacy, others don’t really care to know as much. There are, we are sure, many privacy issues that were not included here in this article. It is just too huge and varied an issue to fully cover in a couple of blog posts, and we would love to hear your thoughts and stories about privacy (below). People are individuals and there is no one experience that describes or represents everyone. The important thing is that people be allowed to control their own privacy in ways that work for them.

Do you have other examples of privacy issues that people with disabilities face? Comment on them below!