What is a disability?

In accordance with the World Health Organization (WHO) definition, we can describe «disability» as the result of the interaction between individuals with a health condition and personal and environmental factors (e.g. negative attitudes, inaccessible public transportation and buildings, and limited social support, etc.).

Here, in summary, some examples of different impairments and health conditions:

Another categorisation can be the distinction among visible disabilities (people on a wheelchair, for example) and invisible disabilities (deaf, autism etc.). In both cases, however, the point is understanding how, within different impairments and conditions, there are not issues and answers that can apply to every situation but, each, depending on the areas involved and the specifics, requires targeted responses. We will try, therefore, below, to give a common basis for what may be a correct overall approach to improving the well-being of sexuality of disabled people, by focusing on the barriers that disable and exclude people with impairments, as described in the Social Model of Disability, thus affecting the development of their sexuality and sexual/love life.

What is ableism?

It is well known how within society disabled people are often misperceived as «lacking sexual desire» or «too innocent» to be educated about sexual and affective behaviour: myths about disability and sexuality turn out to be pervasive in our society.  These stereotypical and standardised visions about disability are also propagated through mainstream media channels, such as movies, TV series, social media and pornography. Although in recent years there have been better examples of representation of disabled people, such as Isaac in Sex Education, unfortunately, disabled people in the media are still often treated with pity and/or are “stripped” of their sexuality. It is assumed that they are, de facto, “asexual” or that they have much more serious problems to deal with and therefore do not engage in love life. Bodies with impairments are therefore invisibilized and infantilized in representations that, very often, fail to describe the reality of disabled people, who, like all people, have the need from an early age to discover their body and sexuality. 

The presence of these false myths, negative attitudes, stereotypes, prejudices, and stigmatizations that discriminate against disabled people are the basis of a social phenomenon called «ableism»: a pervasive system of discrimination and exclusion that oppresses people who have mental, emotional, and physical impairments. Disableism is its contrary, being the practice, structure and behaviour which discriminates disabled people.

Ableism is also about body image and ideals. It revolves around the belief that there is only one form of body, that is the right and the natural one, which is white, straight, cisgender and male to learn more about normativity and bodies, look at  Module 5 – Culture). We can also talk about «internalized ableism», i.e., those situations in which characteristics of ableist behaviours and attitudes are internalized by people with disabilities. 

There is a significant knowledge gap with respect to how ableist discrimination creates and maintains barriers, preventing and hindering disabled people from fully exploring and expressing their sexuality. But we know that some of the consequences of these “paternalistic” pressures that society imposes in overprotecting and infantilizing disabled people, create exclusion of people with impairments from public and political debates on sexuality, the possible undermining of a healthy and satisfying approach regarding one’s sexuality, and the loss of access to sex-ed.

Sexuality and disability

The physical or cognitive impairment of a person does not prevent them from living their sexuality in a satisfying and pleasurable way! As in any other interaction, it is necessary to have awareness and self-knowledge (e.g., to understand what one may or may not like, what parts of the body can cause us pleasure/discomfort, etc.), respect for oneself and the parties involved, consent and communication. 

Situations such as feeling embarrassment and fun during a sexual situation, choosing the right place to have sex, clothes that don’t come off easily, a position that isn’t comfortable, etc., are aspects that any of us can experience and that are part of a reality that mainstream representations too often do not tell. It is useful to remember that this can happen to anyone, and that any situation can be addressed with good communication, mutual respect and knowledge.

At the same time, because sex is not only a “couple” thing, it is also important to stress how important it is to promote and ensure auto-erotism for disabled people. In this regard, are you familiar with the concept of “sexual assistance”? The sexual assistant is a person who, supported by his/her professional know-how (psychology, anatomy, educational background) accompanies disabled people in their experience of erotism and sexuality. In many countries, the figure of the sexual assistant is increasingly demanded and many models are proposed as a right for disabled people to live their sexuality in the easiest and most natural way possible. Unfortunately, the topic is still under-researched, not yet regulated and highly debated.

Structural and Social barriers

The main source of exclusion for disabled people are therefore structural and social barriers, rather than the body of the individual, that prevents the accessibility of people with impairments to physical or social environments. 

The structural barriers are, for example, the absence of ramps, lifts, paths and audio signals for the blind, the absence of subtitles on TV and the internet, the lack of books and braille texts, etc., while the social barriers are attitudes and perceptions that lead to difficulties in the daily lives of disabled people, such as parking in front of ramps, critical comments and stares, the perception that disabled people are less able, require pity, etc. And in our world these barriers stem from the fact that our societies have been designed based on a body that walks, sees, hears and thinks in a certain way.

In the Social Model of Disability (Spectrum, 2018; Oliver 1990), the term “impairment” (i.e., the inability to walk, reduced vision or hearing, etc.) is differentiated from the term “disability”, which is defined as the exclusion experienced by the person because of the imposed barriers. In very simple terms, i.e., when a blind person cannot pass a street safely, the Social Model focuses on the absence of a sound signal at the traffic light while the Medical Model focuses on the visual impairment of the individual.
Barriers, such as the absence of a sound signal at the traffic light, may be physical, structural, social, economic, etc., and are the root of the exclusion of disabled people.
Notably, the Social Model of Disability also implies that disability is “relative”. This means that a person with a mobility impairment is less disabled in a city with appropriate infrastructure, such as Berlin, than in a city that has, for example, a mostly non-accessible metro, like Paris.

So let’s reverse the situation:

The root source of this exclusion is the structural barriers, i.e., low ceilings, lack of chairs etc., and the social barriers, i.e. all these discriminatory behaviours, which Alex faced on a daily basis. And these barriers arise from the fact that this city was built according to a very specific standard, which is that everybody sits in a wheelchair, and therefore anything that is different from it has to adapt to it. 

Both structural and social barriers affect the sexuality and sex lives of disabled people. For example: 

• When you are not able to go out, go to school or work, or go for a coffee, it is more difficult to meet people and therefore to socialise and find romantic and/or sexual partners. 
• Since bodies may not fit the norm thus being considered less desirable, disabled people often feel that others don’t see them as people they could interact with romantically and/or sexually. Many disabled people internalise this belief from a very young age, with consequences on their own self-perception and their path of sexual discovery. 

These barriers also expose disabled people to a higher risk and vulnerability towards abuse and GBV. 

Deconstructing ableism and overcoming barriers

Deconstructing ableism is certainly not easy and takes time, but the first step is surely to understand that the “enemy” is not a person’s impairment, but the structural and social barriers. People with impairments are part of human diversity and the way they look, move, see, hear or think is valid and valuable, whether or not it aligns with conventional societal expectations. 

Importantly, the social environment in which disabled people live plays a crucial role in this process of deconstruction: 

• Families should help the child understand from an early age that its body is part of human diversity and is not responsible for the difficulties it may experience. It’s also important that they create the space to discuss with the child issues related to their love and sex life as it is perfectly normal for a child’s sexuality to develop. They could also seek information and/or refer to a specialist to be better prepared.
• Schools should ensure that all the necessary conditions (infrastructure, support, etc.) are in place; facilitate interactions between disabled and non-disabled students  ensure adequate sex education

Overcoming the concerns you may have about sex as a young disabled person

As a young disabled person, you may have questions and concerns relating to your physical or emotional health with regard to sexual practices and relationships. For example, you may feel:

• concerned about finding a partner
• concerned about whether your partner will find you attractive
• a lack of confidence about your sexual abilities or performance
• concerned about how your body moves or works
• anxiety over your partner’s feelings about you
• concern over pain during sexual activity
• less energy and desire for sex
• concerned about whether you can have children
• worried about what others will think, and about discrimination.

If you recognise yourself in one of these cases… don’t worry! It’s absolutely natural! It is ok to feel frustrated about the effects of your health condition on your sex life, as it takes energy to participate in and enjoy sex especially under conditions such as:

• Pain – it can certainly make you feel less like sex, but if you can find sexual pleasure in ways that minimise discomfort, you may find it helps ease the pain (for a while)
• Fatigue – sex can feel like just another burden when you’re fatigued, but you could reflect on the times in your day when your energy levels are better than others, or just take it slow and easy!
• Mental state – if you’re not feeling well or positive, you are unlikely to feel like sex. 
• Medication – it can affect your sexual interest, thoughts and moods. 

And all these things, although annoying, can happen to anyone. Whether it’s called a headache, period ache, or having a bad day and feeling depressed. It’s okay to not always feel like having sex. Also, always remember that there are many different ways to satisfy yourself and your partner, whatever the condition you live is. Also, just as sexuality is an integral part of a human life, so is affection: be aware of your feelings and emotions, express them, and remember that you are not defined by your impairment or illness. You are a person who desires and loves like anyone else, and you have a right to it.