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Breaking the Stigma: Sexuality and Disability

Julie Entwistle, C.Dir. (c), MBA, BHSc (OT), BSc (Health / Gerontology)

Co-written by Lauren Halliwushka, Occupational Therapist

Unfortunately, in the ongoing quest for an inclusive and equal-opportunity society, “sex” still sells. What used to be in printed material (magazines, newspapers, and fliers) has turned into an online buffet of images that are posted by people of themselves (often filtered, patched and “enhanced”), by people of others (with and without consent), and by photographers, companies and others whose job is to capture the attention of, and entice millions of people, to buy a product, service or idea. The goal of these “sexy” images is to tap into our intrinsic human need and desire for sexuality by adhering to the societal expectations of what is attractive. 

It has only been in the last few years that the concept of “attractive” is changing. Models are increasingly featured in many different shapes, sizes, ethnicities and some campaigns (thank you Dove) are about “natural” beauty.  But despite this small move in the direction of selling with images of “various types of people” presented as “real”, there is one more similarity in advertising that we often overlook. The models are able-bodied, or to use a totally arbitrary term, they would be considered “normal”. 

Why then do we rarely see individuals with disabilities featured in sexually enticing advertisements? It goes back to society’s assumptions of what beautiful and sexy is. Disabled people, through their history of being marginalized, institutionalized, segregated, or otherwise pitied have not been routinely associated with ‘attractive” as a concept. We need to work together to continue to change this perception and to remove the stigma.

Individuals with disabilities are sexual beings. Like you and me, they also have urges, desires, needs, and fantasies. However, a subset of the general population doesn’t think so. According to a systematic review of qualitative articles, a prominent misconception among a sample of the general public is that individuals with disabilities are asexual. Biologically this is odd because individuals with disabilities undergo the same maturation processes as everyone including puberty, reproduction and hormonal surges. Yes, approximately 1% of individuals are asexual but this is all people, not just those with disabilities. Another common misconception is that individuals with disabilities are only attracted to other individuals with disabilities. Inter-abled couples do exist, and relationships can form before or after a disabling event. Compared to inter-racial couples, however, inter-abled are not as common. Why? Well, it is thought that individuals with disabilities may be unconsciously internalizing the stigma and perspectives of society, which further negatively impacts their self-esteem, self-efficacy, motivation, and perceived sexual autonomy. This claim is supported by a qualitative study that gained the perspectives of individuals with disabilities on the topic of sexuality. A significant theme that emerged is the innate belief that their sexuality was not equal to or desired by individuals without disabilities. As such, they were reluctant to pursue inter-abled relationships due to fear of rejection, the partner resenting their disability and the possibility of the partner falling into a caregiver role.

In addition, stigma unknowingly creates various systemic barriers that further reinforce societal and self-stigma among individuals with disabilities, creating a negative counter-productive cycle. There is plenty of literature that highlights the ineffectiveness or inaccessibility of sexual education within secondary schools for individuals with both visible and invisible disabilities. Sexual education focuses on “normal” (that ugly word again) people. Hence, from a young age, we are setting up individuals with disabilities for failure by reinforcing self-stigma and neglecting to acknowledge their sexual being.

Regarding the healthcare system, a study suggests that only 6% of licensed health care professionals engage in frequent discussions about sexuality with patients/clients with half of them stating they avoid the topic due to embarrassment. Keep in mind, this statistic is regarding all individuals, disability or not, which is even more surprising given that sexuality is a crucial component of someone’s health and – more importantly – intrinsic to human nature. No wonder individuals with disabilities are adopting self-stigma if health care professionals shy away from this topic.

This is not about changing what you see as attractive. This is about challenging the opinion that individuals with disabilities are not capable of being sexy and can’t (or shouldn’t or don’t) engage in sexual behaviors. Not only are all people, disabled or not, able to engage in any and all sexual behaviors, but they also have wants, needs and desires like the rest of us. Healthcare professionals that shy away from, or avoid, this topic should consider discussing this aspect of health with patients/clients when appropriate by adopting a comfortable strategy (such as the ex-PLISSIT model).

If you have personally felt, or still feel, the self-stigma surrounding sexuality, please discuss it with a trusted family member, friend or healthcare professional. Specifically, Occupational Therapists are trained to be open about this concept and to problem solve the barriers to sexuality and engagement in sexual activity as a very important “occupation (aka life role)” for all of us.

If you are interested in reading more, I recommend The Ultimate Guide to Sex and Disability by Dr. Miriam Kaufman.

Remember: Disability is extremely broad and can impact people in multiple ways. As with all people, consent is always required when engaging in any sexual activity.

 

References:

 

1 Sinclair, J., Unruh, D., Lindstrom, L., & Scanlon, D. (2015). Barriers to Sexuality for Individuals with Intellectual and Developmental Disabilities: A Literature Review. Education and Training in Autism and Developmental Disabilities, 50(1), 3-16. Retrieved June 18, 2018.

2Miller, A. M. (2015, May 4). Asexuality: The Invisible Orientation? Retrieved from https://health.usnews.com/health-news/health-wellness/articles/2015/05/04/asexuality-the-invisible-orientation

3Esmail, S., Darry, K., Walter, A., & Knupp, H. (2010). Attitudes and perceptions towards disability and sexuality. Disability and Rehabilitation, 32(14), 1148-1155. doi:10.3109/09638280903419277

4McDaniels, B., & Fleming, A. (2016). Sexuality Education and Intellectual Disability: Time to Address the Challenge. Sexuality and Disability, 34(2), 215-225. doi:10.1007/s11195-016-9427-y

5Jones, L., Bellis, M., Wood, S., Hughes, K., McCoy, E., Eckley, L., . . . Officer, A. (2012). Prevalence and risk of violence against children with disabilities: A systematic review and meta-analysis of observational studies. The Lancet, 380, 899-907. doi:10.1016/S0140-6736(12)60692-8.

6Dukes, E., & McGuire, B. E. (2009). Enhancing capacity to make sexuality-related decisions in people with an intellectual disability. Journal of Intellectual Disability Research, 53(8), 727-734. doi:10.1111/j.1365-2788.2009.01186.x

7Haboubi, N. ,. J., & Lincoln, N. (2003). Views of health professionals on discussing sexual issues with patients. Disability and rehabilitation, 25(6), 291-296

8 Taylor, B., & Davis, S. (2006). Using the Extended PLISSIT model to address sexual healthcare needs. Nursing Standard, 21(11), 35-40. doi:10.7748/ns2006.11.21.11.35.c6382

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Redefining “Disability”

Julie Entwistle, MBA, BHSc (OT), BSc (Health / Gerontology)

I love the saying that we are all “temporarily able-bodied”.  How true.  Each one of us, at any time, is one situation, condition, virus, bacteria, accident, or even random event away from becoming disabled physically, emotionally, behaviorally or cognitively.  Or, really, many of us are already disabled – visibly or invisibly, and I truly believe the saying: “be kind to all you meet as everyone is fighting a hard battle” – Plato.

This definition of disability from Wikipedia speaks to how all-encompassing the word really is:

Disability is the consequence of an impairment that may be physical, cognitive, mental, sensory, emotional, developmental, or some combination of these. A disability may be present from birth, or occur during a person’s lifetime.

Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations. Thus, disability is a complex phenomenon, reflecting an interaction between features of a person’s body and features of the society in which he or she lives.

The last sentence is especially true.  A disability is an interaction of the person and their environment.  This is why I love being an Occupational Therapist.  While I do enjoy helping people to function better through therapy that improves physical, cognitive, behavioral or emotional abilities, I also take pride in tackling the environmental aspects of functional problems.  If we can’t change the person, we can try to change the environment in which they live, and the spaces in which they need to function.  This “holistic” view of disability is, in my opinion, one of the key facets of Occupational Therapy.

I wanted to celebrate this important day by listing some of my most favorite quotes about disability:

“The only disability in life is a bad attitude” – Scott Hamilton

“I choose to not place “DIS” in my ability” – Robert M. Hensel

“Just because a man lacks the use of his eyes doesn’t mean he lacks vision” – Stevie Wonder

“One’s dignity may be assaulted, vandalized and cruelly mocked, but cannot be taken away unless surrendered” – Michael J Fox

“We know that equality of individual ability never has existed and never will, but we do insist that equality of opportunity still must be sought” – Franklin D Roosevelt

“I am only one, but still I am one.  I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do something that I can do” – Helen Keller

So, consider that we are all vulnerable and only temporarily able-bodied.  We need to celebrate humanity – in all its forms, including the form that is “disability”.

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When Self-Service is Not an Option – Refueling with a Disability

Julie Entwistle, MBA, BHSc (OT), BSc (Health / Gerontology)

When I was a kid I loved the movie “Back to the Future” with Michael J Fox.  I remember clearly the scene where it shows his parents in the 50’s at a gas station – back then, “full serve” meant windows were cleaned, the car shined, tires pumped, and of course your gas tank refilled.  It was like the pit-stop at a NASCAR race where you would have multiple people at your vehicle getting you on your way quickly.  Fast forward to today where “full-serve” is uncommon, and finding a station where someone can fill your tank while you wait in the car might require you to venture out of your way. 

So, how does this translate for people with disabilities?  Well, firstly, there are many people that can and do drive a car regardless of a mobility impairment.  Cars can be modified to accommodate the specific needs of many people with physical challenges.  Hand controls, left-footed gas pedals, spinner knobs, automatic wipers, voice controls…to name a few.  That is all fine while the vehicle is being operated, but what about when it is time to refuel?  It is possible, but not always efficient or safe, for people with a physical impairment to get out of the vehicle, grab their mobility device, and wait outside the car in the elements to refuel.  Not to mention the safety risks of these tight spaces, other vehicles, and fall / slipping hazards of wet and uneven ground.

Considering the move away from “full-serve”, I wanted to look in detail at the services offered by gas stations to help people to refuel when mobility is a challenge.  I was surprised at what I found – some stations have well listed policies that are clear and supportive, while others have no policy or tell people to “call ahead” before coming to refuel.

Here is what I found about ways to refuel if getting out and around your car at a gas station is not the best choice for you…

I give the following companies a THUMBS UP:

ESSO

(https://www.esso.ca/en/gas-stations)

Drivers with disabilities can use the Esso Fuel Finder to find stations that offer the fueling option that best meets your needs: 

Split serve stations: Both full- and self-service options are available to customers
Full serve only stations: Full service is available to customers
Self-serve only stations: While some of our stations have designated Disability Fueling Assistant hours where more than one attendant is available, often there is only one attendant on duty at self-serve stations.

We recommend you call ahead to see if appropriate staffing arrangements can be made. Contact information is available on the Esso Fuel Finder.

SHELL

(http://www.shell.ca/en_ca/motorists/inside-our-stations/refueling-for-drivers-with-disabilities.html)

Drivers with a disabled parking permit will receive full service at self-serve prices at stations with both full and self-serve pumps. The gas station attendant will fuel your vehicle at the self-service island so that you pay only the self-serve price for fuel. Customers should identify themselves to one of our gas station attendants. Please note this service is available only during full service hours.

At self-serve only stations, staff will make every effort to help customers displaying disabled parking permits with refueling. Please identify yourself to one of our gas station attendants. We also encourage you to contact your local station to discuss your individual needs as some stations have limited staff and payment access.

PETRO CANADA

(http://retail.petro-canada.ca/en/stationsstores/customers-with-accessibility-needs.aspx)

At participating split-service stations, a site which provides self-service and full-service at the islands, drivers with an accessible parking permit will receive full-service at self-serve prices. The full-service attendant will fuel your vehicle at the self-service island so that you pay only the self-serve price for fuel.

Find a Petro-Canada station with full service

At participating self-serve stations, customers with an accessible parking permit can drive up to a two-way call station located at the fuel island and press the button to speak to the attendant inside the store to request assistance with fueling their vehicle.

The following get a THUMBS DOWN:

PIONEER

(http://www.pioneer.ca/Portals/1/Images/About%20Pioneer/Pioneer%20Accessiibility%20Policy.pdf)

Pioneer’s site only speaks to assistive devices, communication, support persons and service animals, but does not address the challenge of people with physical impairments being able to refuel.

CANADIAN TIRE GAS

For non-full serve stations, people are required to schedule an appointment with the retailer for refueling.  ONRoute locations offer full serve to all customers between the hours of 7am and 10pm, 7 days a week.  For service outside of these hours, an appointment is required.  Those using the full serve through the Disability Assistance Program will be charged self-serve prices.

COSTCO and ULTRAMAR:

No information is provided. 

In summary, I was impressed by what I found and applaud Shell, Esso and Petro-Canada for being so progressive and supportive on this issue. For the rest, I presume that the Accessibility for Ontarians with Disability Act (AODA) will require those that are behind in offering disability-friendly refueling options to develop policies and procedures and to post these to be easily found on their websites.   In the meantime, I trust those drivers with mobility issues will use and benefit from what Shell, Esso and Petro-Canada have to offer people in their situation.

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A Step in the Right Direction — Forward

The Forward Movement, an advocacy group, is working hard to raise awareness and make change in Ontario.  The group is working to have Ontario officially adopt the Dynamic Symbol of Access to replace the currently used International Symbol of Access.  Why?  The dynamic symbol shows action and movement symbolizing differing abilities and can help to change the way society views disability.

It was all about the disability, and not about the person,” says Dylan Itzikowitz, co-founder of The Forward Movement, about the current symbol.

Learn more about The Forward Movement in the following article from CBC News.

CBC News:  Accessibility activists want to ditch iconic symbol highlighting the wheelchair, not the person

How can you support The Forward Movement?  Sign the petition, make a donation, follow The Forward Movement on social media, and/or become a Proud Partner like us.  Learn more about these great ways to get involved by visiting www.theforwardmovement.ca.

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Dear Everybody: Let’s Put an End to The Stigma of Disability

Children living with disabilities often face a number of physical and mental challenges, however, on top of this are also facing social challenges such as bullying and lack of inclusion.  In fact, Holland Bloorview Kids Rehabilitation Hospital states that 53% of children living with a disability have zero or only one close friend.   Holland Bloorview has created a new campaign to help put an end to the stigma of disabilities.  The Dear Everybody Campaign aims to provide awareness, knowledge and resources to help put an end to the stigma of disability.

Learn more about the campaign and help create change by visiting their website deareverybody.hollandbloorview.ca.

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The Ability App

As seen on Ellen!  Today we wanted to showcase the inspiring story of a 12 year old boy who saw a person in a wheelchair struggle to open a door and as a result started building an app to help people better navigate communities.  Learn more about Alexander’s story and this amazing app by visiting The Ability App website.

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Disability Sensitivity — How to Guide

Are you unsure how to interact with someone who has a disability?  This blog from The Rick Hansen Foundation offers some handy do’s and don’ts that can help.

The Rick Hansen Foundation:  The dos and don’ts of disability sensitivity

In Ontario, under the Accessibility for Ontarians with Disabilities Act (AODA), organizations are required to train employees and volunteers on how to provide customer service to persons with disabilities.  If your organization requires this training and is looking to enhance its customer service try our AODA Customer Service Training Program which delves deeper into how to interact and effectively service persons with disabilities.

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Parents Call For a Change in Public Opinion

A recent survey suggests that 45% of Canadians believe children with disabilities lead less fulfilling lives.  However, this is certainly not the case.  While there may be increased struggles, families with disabled children are asking the public to change their views.  Learn more in the following article from CTV News.

CTV News:  Canadians urged to rethink their view of kids with disabilities

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Personal Injury Advertising – A Picture is Worth….

Julie Entwistle, MBA, BHSc (OT), BSc (Health / Gerontology)

I was recently at a stoplight in Hamilton, stuck behind three busses spanning three of the four lanes in front of me.  All three were covered in ads for three different law firms, all personal injury.  Drive another block and there are anywhere between four to eight billboards again advertising personal injury services.  Some are soft, subtle and warm.  Others are creative, catchy and cleaver.  Then there are those that are more fear-mongering, “in your face”, and aggressive.  Whatever the style, message or format, clearly these ads represent the culture of the advertising firm, leaving the “buyer” to choose the approach that best might meet their needs.

Now the focus of this blog is to not bash the way lawyer advertising has evolved.  If signs in parking garages, washrooms, bars, hospitals, or on busses, benches and billboards work, go for it.   Lawyers are intelligent people, if the ROI on these investments is not paying off, I assume they would find an alternative.  However, I do know that within their own community, through events I have attended and articles I have read, that many firms are being criticized for the approach they are taking with the more aggressive “you don’t pay until we win” mentality.  Also, the fear-mongering approach directed at a population of vulnerable and often disadvantaged people can be viewed by many as distasteful.  Honestly, I think the public are becoming somewhat desensitized to the vast number of ads marketing the same thing and the more these ads surface, the less impactful they become.  But as a business owner, I can understand the intense competition in the industry and respect any professional who invests in their business, or themselves, to make a buck.

Where I think these ads need to improve, however, is in the representation of people with disabilities.  Some ads get this perfectly.  They show everyday survivors (presumably “real” past clients) doing the things they love, or “living” after their tragedy.  That, to me, hits the nail on the head.  Others though use images that are transparently “fake” and confuse the message.  Taking a photo of a fit, young(ish) person in Lululemon clothing who looks like they are ready for the Paralympics but is sitting in a clunker wheelchair from the 70’s just doesn’t jive.  The image is flawed and the message is lost.

As an advocate for people with disabilities, I would like to see a movement of “real” people with “real” disabilities center-stage for these ads, and in any ad for that matter, that is trying to represent this population.  Why?  Because it is easy for a non-disabled person to sit in a wheelchair for a photo, but the reverse is not true in that a person who actually uses a wheelchair cannot just “stand-up” to pose as a “non-disabled person” for a photo shoot.  So, let’s give the money spent on stock-photos, modeling and the resulting income to the population of people that “live” these problems, not to regular people who don’t truly represent.

And yes, I am guilty of this as well.  In searching for website stock photos we found several where the person in a wheelchair is standing in the next image.  Or, the one where you see the back of my husband sitting in a wheelchair to capture the image of a once real, but now needed-to-be-simulated, client-Julie interaction.

In searching for a way to better support the community of disabled persons, and to ensure the photos we use in our own media align with “real” people, we came across these sites which sell “true” stock images:

Lawyers working in personal injury – I hope you will join the movement to improve the representation of “disabled people” in your ads to, if nothing else, better support that community financially, realistically and appropriately in your advertising.