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Being held and bodily pride: What touch deprivation does to the self-esteem of disabled people

Richard_ScopeRichard_Scope Posts: 2,830

Scope community team

This article was written by Charlotte Faragher and is shared here with permission. 

Whilst it's true that many of us have been, and are, still unable to receive and give forms of affection we might previously have taken for granted. An experience is known as touch deprivation.

Have you ever thought about what experiencing touch deprivation, irrespective of a pandemic, might do to a person’s psychological and physical well-being as a result?

This has certainly been the case for me. As a young disabled woman living with quadriplegic cerebral palsy and also being a permanent wheelchair user. As one might guess, a severe lack of regular consensual affection and touch in general in non-medical related situations does have a severe impact on my self-esteem.

I want to use this article to speak more about how this reality makes me and possibly others feel. So that people outside of it might think differently moving forward with life post-pandemic. Or at least be more appreciative of what they do have or can obtain easily. 

It's been scientifically proven that hugging and close affection is central to bonding. Mothers are encouraged to engage in skin to skin contact as soon as a newborn arrives to strengthen this. Hugging releases vital mood-boosting, illness busting chemicals such as oxytocin, serotonin and dopamine. All of which are key to our personal development and generally learning how to use our emotions to navigate the world. 

[Woman being hugged by a taller person]

But how is a person affected if they don’t experience all of this as regularly and easily as others?

From firsthand experience, I can definitely say I've been negatively impacted. But please know this is not due to neglectful, damaging parenting.  Anyone who knows me would openly say I am the world’s worst worrier. And it has been shown that affection is a wonderful aid in stress reduction. However, I think my fearfulness has been exacerbated because much of the time showing me affection cannot be spontaneous. 

Without my wheelchair, I would not have the support which allows me to remain upright in a good sitting position. And I cannot easily adjust myself to accommodate more complex hugging positions for others. This means that giving me a hug still takes effort on the part of the other person which I find embarrassing. So I think that increased effort is part of the reason why many people, certainly outside of my parents, do not hug me very often. 

I understand this reaction to a point as I accept the belief that people close to me don’t want to physically hurt me and everybody is different (see what I did there?). Still, however melodramatic this may sound, an absence of such intimacy underscores the belief that my body, every part of it, is unworthy of adoration, playful exploration and pride from both me and the one I’m trying to share intimacy with. As an example, I would feel a sense of joyful power if I were to receive more hugs whilst out of my wheelchair. It would feel exciting to know that someone I have a deep, safe connection with could willingly choose and be proud to hold my body in this way. Possibly even for hours in a romantic sense. Especially when so often my body is deemed undesirable and something to be feared. 

[Non-disabled woman holding the hands of a disabled person whilst having food and wine]

It has long been said that activities such as burlesque help people feel joy and autonomy within their own bodies. I have often dreamt that I am in the profession myself. It's an added thrill that my body is framed as glamorous and desirable in these dreams, characteristics not usually afforded in real life. One must remember, however, that despite the control and ownership that practices like burlesque seem to afford, women, in particular those who work in these industries, must walk a fine line. It's a line between giving a performance and the worry that the performance may be misconstrued.

This worry highlights the double standards which different sexes face concerning bodily pride. Which in many circumstances I have to be acutely aware of, both as a disabled woman and a female. It also makes the road to fully loving and accepting my body much harder to tread.  

In summary, I hope this article has opened the reader’s eyes to what a lack of affectionate and consensual bodily contact can do to the self-esteem of disabled and touch-deprived individuals. I hope that more people will have the courage to safely engage with bodies such as these. And that more education can be given on sexual etiquette. So everyone can experience feelings of joy, power, safety, and the romantic liberation that we richly deserve.

Specialist Information Officer - Cerebral Palsy

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  • newbornnewborn Member Posts: 713 Pioneering
    Yes, to think you may never be touched till you die, other than in anger or indifference is not good. I think people go to be massaged, or men go to whatever, or women go to spend hours in hair and beauty salons,  often just for the human touch.   But disability can make those things difficult or impossible.  For bodies which have pain, being pummelled and pressed by a massage would be out of the question, and there's no such thing as a 'stroking massage'.   (There should be)   Years back, in New York,  there was a scheme of strictly no-hanky-panky hugging, which was popular because a lot of women and some men just wanted to be held.
  • lisathomas50lisathomas50 Posts: 4,324 Disability Gamechanger
    When I was about 12 years old I had to spend a short time in a wheelchair  when my bones in my feet were jointed and I had my tendons lengthend  

    Whilst I spent time in my where chair people always  rubbed the top of my head or rubbed my hand I used to hate people randomly touching me without asking.

    I am still the same now people touch you when they are talking pre covid or hug you or touch your face thats the only good thing about covid 

    I supose I am like it more because of the abuse I suffered when I was younger but since I can remember I have been like it my mum said I wasn't a baby thst liked to be touched or fussed over maybe its just me 
  • newbornnewborn Member Posts: 713 Pioneering
      Oh yes, Lisa, being touched without invitation, above all patted on the head, is so insulting and dehumanising and patronising.  You don't touch someone else's child or dog without invitation, so you don't touch people who are at a lower level because they are sitting, or because they have dwarfism
    .  It is empowering to use one of those either standing or rising seat wheelchairs, so you are pretty much the same head level. 
      Everyone knows women get less pay and less promotion on average than similarly qualified men, who on average are taller than women.  But did you know shorter men get less pay and less promotion, on average, than similarly qualified fellow men?
  • lisathomas50lisathomas50 Posts: 4,324 Disability Gamechanger
    @newborni didn't know hight affected promotion 
  • pattern1991pattern1991 Member Posts: 31 Courageous
    i wrote this glad it generated discussion  
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