About Jennifer Cole

Jennifer Cole (SL: JennyLin Arashi) is a founding member and Director of the GimpGirl Community. Jennifer is also a research associate in the Experiential Design and Gaming Environments (EDGE) Lab at Ryerson University. She has worked with Oregon Public Health to create state policy recommendations around women with disabilities and sexual health. Jennifer currently resides in Washington State. She is an invited speaker and author on topics such as disability, social media, technology and sexuality.

Accessible Gynecologists

 

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

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

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

GimpGirl Turns 14

Today marks the 14th anniversary of GimpGirl Community! We have taken many forms in the last 14 years, but our mission has always remained the same: to bring together women with disabilities in the spirit of mutual support and positivity. That single mission brings together individuals with many different disabilities from a variety of countries and backgrounds to share our commonalities.

Our community’s administrators and facilitators have always been women with disabilities who volunteer their time because they believe that our community should be strengthened from within by people who understand the lived experience of being a woman with a disability.

We have also grown through the support of many others. Indeed, it is through volunteerism, in-kind donations of services, creative management of available resources and the use of open source and free to use online tools that we have survived and flourished.

Do you have any stories, anecdotes or favorite memories of your time with GimpGirl? We would love to hear from you on your experience of the last 14 years!

Spotlight: Sins Invalid

Every now and then we like to spotlight organizations other than our own that in some way support the voices of women with disabilities. Check out Sins Invalid!

What is Sins Invalid?

Sins Invalid: An Unshamed Claim to Beauty in the Face of Invisibility (aka “Sins”) is a San Francisco/Bay Area based performance project that incubates and celebrates artists with disabilities, centralizing artists of color and queer and gender-variant artists as communities who have been historically marginalized. For the last five years, our performance work has explored themes of sexuality, embodiment, and the disabled body to sold-out audiences.

What people say…

The world of enforced and embodied norms constricts all of us, regardless of where we identify on the spectrums of sexuality, gender, or ability. In this project, people with disabilities are engaging in the wholeness of our bodies and our sexualities. When people experience our shows they are deeply impacted:

“I am moved beyond words, moved to an emotional state that I can’t quite explain. Thank you for making this space possible!” – audience member 2011

“You are brilliant and beautiful and help me remember that so am I.  Thank you.” – audience member 2011

“What makes Sins Invalid so powerful is that it thoroughly succeeds artistically and erotically, separate from the impact of its political message. Sins Invalid challenges its audience to think about sexuality, beauty, and disability in new and expanded ways. But Sins Invalid is also, quite simply, a hot, arousing, sexually charged evening of thought-provoking, imaginative sexual entertainment that only happens to be entirely by and about people with disabilities.” – David Steinberg, SFGate

Want to support Sins Invalid and their upcoming movie project? Visit their Kickstarter page and help them reach their goal by February 14th! Can’t donate? Just help by spreading the word to friends!

Featured Work: Margie Suarez

One of the focuses of GimpGirl Community is to spotlight the work and voice of women with disabilities. Below is three amazing poems from Margie Suarez. Want your work featured? Contact us and let us know!


My name is Margie Suarez. I am working towards a Masters in creative writing.  My favorite poet is Maya Angelou. I would like to thank my family and friends for encouraging me to continue writing.

Continue Reading Featured Work: Margie Suarez

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.

Engaging with the Community

Since the launch of our new website earlier this month, many of you might be wondering how to engage with our awesome community of women with disabilities outside of this website. Take a moment to look to the right of this post (on our website), where you will find a collection of icons (under “Follow Us!”) for various social media and online tools that GimpGirl uses. Each of these icons link to our specific group or page. They are a great way to find us around the Internet!

On Facebook, we have an amazing, active forum for posting links, sharing stories and ideas, and discussing various relevant topics. Outside of our weekly meetings on Second Life and our Chat Room (IRC), our Facebook group is probably the best way to connect with other women with disabilities.

What if you just want to keep track of blog posts or events? Twitter is our largest group, and is a great way to keep track of links to relevant news topics and GimpGirl’s events. You can view our Google calendar to see upcoming events, as well as subscribe to the calendar to see the event times in your time zone and sign up for notifications when events are getting close. If you use an RSS blog reader, you can add our RSS feed. If not, you can also follow our various groups and communities on FriendFeed.

Our Flickr community is a must-see, with member pictures, event snapshots, and various works of art. On LinkedIn, you can network with other women with disabilities on employment and other professional matters. If you would like to buy various items with our logo on them, visit our Zazzle store (hosted by NoPityCity).

So, what are you waiting for? Connect with us and join the conversation!

Stop SOPA/PIPA

We here at GimpGirl have a 14 year history of showcasing compelling, original stories that are the direct personal experiences of women with disabilities, as well as curating the best material to support our members in leading their kickass lives.  We get to tell innovative, creative stories that no-one else is telling.

If SOPA/PIPA passes, it could genuinely become too expensive and too much of a potential legal problem for us to be able to continue our curation practices, or even to tell stories where women say things like “I saw a movie and it inspired me to change my life.”  Or worse, it could mean that Google considers this too much of a risk to index our site, so we won’t be able to be found by women looking for information.  Under SOPA/PIPA, ANYWHERE that people express themselves – our site, our LiveJournal, our Facebook group, our Twitter, our Second Life – could become too much of a legal risk or get shut down.

Please support SOPA/PIPA actions today to keep the Internet free and safe for everyone – especially rarely heard voices like women with disabilities.

Here are some links on PIPA/SOPA:

Clay Shirky gives a 10 minute speech on the topic (video, not
subtitled) – http://www.ted.com/talks/defend_our_freedom_to_share_or_why_sopa_is_a_bad_idea.html

Fight for the Future
http://fightforthefuture.org/pipa
(Subtitled version of video here:
http://www.universalsubtitles.org/en/videos/5A31ep7v6HFd/)

Google’s Take Action Page
https://www.google.com/landing/takeaction/

Huffington Post on the blackout:
http://www.huffingtonpost.com/mobileweb/2012/01/18/sopa-blackout-internet-censorship_n_1211905.html

Mashable on the blackout:
http://mashable.com/2012/01/18/sopa-dark-ages/

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

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!