Let’s Talk about Sex and Disability

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

 


 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 


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

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

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

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

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

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

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

Poverty

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

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

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

Fear

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

Fear of losing assistance or being institutionalized

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

Fear that you will get in trouble

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

Fear of Not being Believed

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

Fear of Further Abuse

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

Inaccessibility

Physical Inaccessibility of Shelters

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

Programatic/Systematic Inaccessibility of Shelters

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

Inaccessible information

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

Communication Barriers

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

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

Of course, what if you’re completely nonverbal?

Lack of Understanding

You Don’t Understand That You’re Experiencing Abuse

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

You Don’t Realize Specific Actions Are Abusive

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

 


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

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.

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!