Health promotion activities rarely target us or even tailor their messaging, information product or activities to accommodate some of our needs and/or realities. For example, women with disabilities receive less screening for breast and cervical cancer than women without disabilities. Or adolescents and adults with disabilities are more likely to be excluded from sex education programs.
My name is Tim Rose and I run Disability Positive Consulting. I am very active within the disability and sex positive communities and speak on issues of related to disability and sexuality. I am also the cofounder of the Rose Center, a registered charity focused on the promotion of positive representations of disability in the context of sexuality and romantic relationships. I am a long-time advocate, activist and writer in the area of disability.
About the author: Tim Rose
To learn more about Tim Rose visit www.therosecentre.ca
Join the Conversation
Sexuality is an important part of being human and healthy sexuality is an important part of an individual’s overall health and well-being.
In the context of health care, including sexual and reproductive health care, it is crucial to change the way that disability is perceived by service providers and to frame it in relation to sexual rights. Disabled people are routinely denied their sexuality and it certainly has implications on the kind of care, supports and information we are offered. It is critical to support and celebrate sexual expression for people with disabilities.
Some of the social and structural factors that impact the disabled community include a lack of physical access to several services, clinics and spaces; inequitable access to resources; government policies/official guidelines/practices/organizational cultures, etc. that actively marginalize our community; and internalized stigma. There is also a societal view of disability that remains predominantly negative.
So let’s talk about it so we can all work together towards better relationships!
Who are we talking about when we say people with disabilities/disabled people/people with different abilities? It includes all of us who have physical or intellectual/cognitive disabilities. Someone’s disability may be a chronic condition, congenital or the result of an accident/illness. The World Health Organization estimates that about one in ten people in the world are living with some kind of disability. Disability is a natural part of the human experience and an aspect of human diversity. It is important to remember that these odds mean that it’s pretty certain every health care providers have patients who have disabilities. This also should alert us about the need to be mindful that people with disabilities are a diverse group and that, when we speak of access to services, resources and support, there are other factors that are at play, including race, sex, gender identity, sexual orientation, ethnicity, and culture, only to name a few.
The language around disability is always changing and varies depending on preferences. Ask how the individual would like to be identified and how they would like their disability referred to. Some people prefer “person with disability” while others prefer “disabled person”. Don’t assume, just ask.
Sexual and reproductive health care matters for everyone, be they sexually active at the time or not. Some deeply ingrained assumptions about people in the disabled community are obvious barriers to getting the information and the care we need and deserve when it comes to taking care of our sexual and reproductive health. For example, disabled people are often assumed asexual, celibate, or undesirable. Or are denied sexual and reproductive health services because medical professionals assume, or judge, that they have more important things to worry about. Or that they don’t have the ability to handle discussing matters of pregnancy intentions, sexuality, etc. Perhaps, it is not even on the radar of our health care providers that they should share basic information with us about matters of sexuality and reproduction.
This is made more complicated by the fact that, not only is there a lack of disability specific sexual education in Canadian schools, something that can impact our ability to make important decisions about our bodies and health, it also makes it harder to ask the right questions, or for the right supports. Our health care providers also often lack the training, knowledge, or awareness to be able to adapt information or practices to serve differently abled patients.
These important gaps are often the result of assumptions that are made about people with disabilities.
Myths about sexuality and disabled people
People with disabilities are not sexual and/or not desirable
The only sexual beings we see in the media and in pop culture generally are young and able bodied. Disabled people are not considered to be desirable or to have desires. Of course there are people with disabilities who are asexual, but living with a disability does not mean you can’t be sexual or that you are undesirable, or that you are not partnered.
People with disabilities have more important things to think about
Many operate under the assumption that living with a disability is a tragic or negative identity that needs to be corrected through medical or social interventions. This often negates the possibility of seeing us as sexual beings and puts the focus on everything else that needs to be achieved to ‘fix’ our bodies, minds and/or lives instead of providing the care and support necessary to live our lives fully.
People with disabilities do not get sexually assaulted
Many people experience sexual violence. They face it at the hands of partners, families, people they interact with, people they barely know. There is no place or time or a particular situation where sexual assault is more or less likely. But we know that certain factors like low social status or low ability to negotiate can make people more vulnerable. Disability is also a factor that can contribute to someone’s vulnerability to assault despite that fact that it is often invisibilised by the fact that we are not seen as sexual beings. This makes disclosure of the violence we face and getting support that much more challenging. Some of us may need to rely on care from individuals or institutions, some of whom take advantage of this situation. Some of us may be isolated, or seen as an easy target. Nobody deserves to be assaulted or asks for it. Statistics show that the risk of being physically or sexually assaulted for an adult with developmental disabilities is much higher than it is for other adults.
People with disabilities don’t need sexuality education or sexual and reproductive health information
This is where other assumptions about people with disabilities come home to roost and decisions are made on our behalf about what to even make available. For example, our educators or health care providers might just not think that it’s important for us to have information and/or resources and tools when it comes to taking care of our sexual and reproductive health. That is without even thinking of adapting existing information to present it to us in ways that make sense and that are relevant to our lives and our different abilities. We have a right to access reliable, accurate, comprehensive and accessible information about our sexual and reproductive health, our rights and our responsibilities. It is certainly important in the context of supporting the expressions of our (diverse) sexualities in a way that is gender-sensitive, free from stereotypes and provided in an objective, critical and adaptive way. This includes the need for opportunities for experiential learning and repetition to emphasize safe boundaries and healthy relationships.
People with disabilities cannot or should not be pregnant/parents
The range of feelings people with disability have about becoming pregnant and about parenting is wide, just like in any population. Some disabilities may affect pregnancy, birth and early parenting and we need knowledgeable health care providers to support us in those experiences. Some of us need support to avoid getting pregnant or to access abortion services. The issue is that we are often assumed either unfit to be pregnant or parents or unable (or unlikely) to get pregnant which means we don’t get the information, the tools and the supports we need to realize our reproductive rights.
What’s your relationship status?
The medical community and health care system have long histories of marginalizing and at times, demeaning those of us with disabilities. Even to this day, many medical professionals seek to eliminate disability from our society, viewing the disabled body, neurodiversity, or intellectual disabilities as inherently incorrect and needing to be ‘fixed’. It has certainly impacted these important relationships with our health care providers.
The availability, and especially accessibility, of healthcare services has a huge impact on the well-being of our very diverse community and the fact that our needs are often after-thoughts have impacted our ability to get the best possible care. The fact is that many people with disabilities rely on health care services on an almost daily basis and when those services are not provided, or not meeting our needs, it affects every part of our lives.
This certainly needs to be addressed because when persons with disabilities are empowered to participate fully in societal life, our entire communities benefit.
Barriers to health care
In most health care settings, there is a lack of adequate disability policies, guidelines, trainings and other supports that could flatten obstacles we face when we need to access health care. Many people with disabilities must spend a vast amount of energy and time in order to receive adequate health care. Delays in receiving appropriate health care limit functioning.
Barriers can take many forms and may have to do with the physical environment, information and communications technology, legislation or policy, or with societal attitudes. It is important to name them to be able to put our heads together to spearhead positive interventions.
The term ‘disability’ is a large umbrella for a range of different conditions and circumstances that it is impossible to anticipate every barrier or challenge. This means that it is important for healthcare professionals to maintain a high level of flexibility and understanding when dealing with disabled patients. Individuals are the experts on their own bodies and that is especially true when it comes to disability. If we do not listen to that expertise, we are in danger of ignoring intimate knowledge. Disabled bodies can work differently. It is not ‘better’ or ‘worse’, it is just different.
Some challenges we face
We can often face significant financial barriers when it comes to accessing all that we need to support our health and wellbeing. Depending on circumstances or the type of disabilities, we may have a hard time finding a job or earning enough money to cover basic and health care needs, including important medical equipment or therapies. Many of us are at risk of poverty which has huge health costs.
We are often excluded from decision-making when it comes to our health. Even people or organizations with the best possible intentions can often treat us as passive recipients of services without getting our input in our services could be best adapted, or what needs are not being met in the health care context.
It can be difficult finding knowledgeable providers who are well versed in our care. This is especially dire when treating those of us with complex medical conditions, particularly when we are not in urban areas. This can also manifest in the lack of knowledge around how to provide basic support like help when we need to undress at medical offices or how to transfer us to an exam table, etc.
Physical access to the places where we can get care, as well as physical access to the services we need is not always guaranteed. For example, it is important to consider physical transit issues, like how for those of us with severe physical disabilities and who rely on para-transportation services, we often have to wait hours, miss appointments, etc. There is also often a lack of information and communication materials available in Braille, in large print, in simple language, and pictures and lack of sign language interpreters.
It is also crucial to assess how accessible the space is, possible communications barriers (such as a speech difference, which may mean that an appointment may take longer to make sure that everyone is satisfied that important information has been communicated), or sensory orientation challenges. Some tips to improve the accessibility of a space can include having automatic door buttons installed, wide hallways, and larger exam rooms. It can also include alternative signage, reduced lighting or private spaces. Finally, many disabled people require assistance to transfer out of their mobility device and equipment should be in place to accommodate that, especially if it is policy to use such device but they are not easily accessible, which can delay care.
In order to help address these and in addition to the physical alterations that may make a physical space more accessible, all personnel in health care services should undertake disability awareness trainings and should be open to being flexible and adaptable. Disability is never a one-size-fits-all solution.
Not knowing where to obtain information that is relevant to us can certainly impact our sexual and reproductive health. It can be very difficult to track down relevant and culturally appropriate information to support better sexual and reproductive health outcomes, in addition to the expression of our sexuality. Many of us may also feel uncomfortable or nervous when discussing sexuality. Because of the deep-seated stigma that exists around the sexuality and sexual activity of people with disabilities, we might not even know where to start to spark important conversation about sexual and reproductive health matters.
We may not be the only ones who are uncomfortable! Our health care providers may have misconceptions or hold assumptions about us and our bodies that can get in the way of getting pap tests or gynaecologic exams done, information on ways to have sex safely, access to safer sex supplies, getting tested for STIs, etc. Even a health care provider may usually be very open about sexuality with clients, they may feel differently when working with people with disabilities. It is important for health care providers to reflect and challenges their views of people with disabilities!
Experiencing stigma, disrespect and being treated unfairly in health care settings can impact the quality of our care and our ability to access the services we need. If our lives are not seen as being equally valuable, if respecting our privacy is not viewed as important, if we are not given information because we are perceived as not able to deal with it or process it, if people don’t want or don’t know how to touch us, if they are ‘annoyed’ at the added complexity of our care, it takes a toll on our health and on the quality of care we get.
Ten Key Messages about people with disabilities and the right to health care
Source: World Health Organization
Disability is everyone’s business.
People with disabilities are not necessarily sick.
People with disabilities have sex too.
Access means more than ramps.
People with disabilities want the same things in life that everyone wants.
For people with disabilities, prejudice can be the biggest barrier.
Everywhere and always, people with disabilities are entitled to self-determination, privacy, respect and dignity.
It is best and usually easy to mainstream health services that accommodate people with disabilities.
People with disabilities are a crucial constituency in all programmes.
Programmes best suit people with disabilities when people with disabilities help to design them: “Nothing about us without us” is a key principle.
Promoting sexual and reproductive health for people with disabilities: Tips and Tricks.
The barriers highlighted above don’t necessarily have one-size-fits-all fixes. Some key ways to have better relationships and healthier patients and communities is for health care services and health care providers to raise their awareness of our needs, of the ways to respond to them, and of the stigma and discrimination we may face, and finally to show flexibility in how to tailor care according to some guiding principles of inclusion.
To help you assess and improve health care delivery to people with disabilities, establish partnerships with organizations of people with disabilities. Among the best ways to raise awareness and build capacity in-house is to always include disability-related sessions into trainings all staff may be getting. Whenever possible, experts from organizations of persons with disabilities should be the ones conducting these sessions and/or advising trainers.
Make the needs of people with disabilities an integral part of the work done in your clinic/office/practice as separate programs are usually not necessary. Inform yourself to disarm the assumptions that can get in the way.
See that all of your sexual and reproductive health programs/supports/practices also reach and serve us. Simple awareness can go a long way. When considering the care provided to your patients when it comes to their sexuality, their pregnancy intentions, their reproductive health needs, or sexual health, would you say that you are offering the same quality of care when the patient is disabled? If no, what can be done to change that?
Assess the facilities from the perspective of people with disabilities. This can look like considering adaptations like ramps, easy to understand graphics, language interpreters, a variety of disability inclusive information products, etc. Many adaptations can be simple and not very costly. Some are investments in ensuring that all patients are getting the optimal care!
Be mindful of transportation needs and see if there are ways to facilitate access to places where sexual and reproductive rights are available.
Promote awareness of disability in your community!
The Rose Center for love, sex and disability (based in Toronto)
Deliciously Disabled Consulting (based in Toronto)
The Sexability Program (based in Toronto)
centers for independent living (Canada wide)
Kaleigh Trace (based in Halifax)
Pleasure Able (online/hard copy publication)
The ultimate guide to sex and disability (hardcopy publication)
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