Being held and bodily pride: What touch deprivation does to the self-esteem of disabled people — Scope | Disability forum
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Being held and bodily pride: What touch deprivation does to the self-esteem of disabled people

Richard_Scope
Richard_Scope Posts: 3,176 Scope online community team

October is Pro-Touch Awareness Month and as a part of the campaign to raise awareness of the importance of consensual touch and physical closeness We reshare this excellent blog.

This article was written by @pattern1991 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.

Scope
Specialist Information Officer and Cerebral Palsy Programme Lead

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Comments

  • newborn
    newborn Member Posts: 746 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.
  • Lisatho11987777
    Lisatho11987777 Member Posts: 5,787 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 
  • newborn
    newborn Member Posts: 746 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?
  • Lisatho11987777
    Lisatho11987777 Member Posts: 5,787 Disability Gamechanger
    @newborni didn't know hight affected promotion 
  • TLW51
    TLW51 Member Posts: 4 Listener
    I'm 51 and at this point I've 'given up' per se on a relationship.
    There are other areas in life to seek joy.  If something comes along later, great, but at this point things like walking are exhausting. It's more difficult now in my fifties living with CP than it ever has been. So at this point it's looking for joy in things like my son, friendships, and church. 
    Romance isn't a necessity for life. I think people focus WAY too much on having some form of a relationship. Sometimes it's just not worth it.
  • steve39
    steve39 Member Posts: 52 Connected
    hi i understand what your saying but at 65 i'm always hopeful of being able to start up a new relationship with the right one,  
       i guess it's just a question of being in the right place at the right time and seeing what happens
    steve
  • JustPete
    JustPete Community Volunteer Adviser, Community Co-Production Group Posts: 174 Pioneering
    I think our perception of being touched needs, in part, to be framed culturally.   Some cultures shy away from touching and showing affection in this way.

    Then we get to a 'disability' perspective.  I am touched each an every day by people whom I have given 'unsaid permission' to touch me - otherwise they would be unable to assist me,  Actually, I hate the wearing of gloves when being assisted (having only started with the COVID pandemic).

    Moving on to being touched by people without 'said/unsaid permission' then I call it out immediately.

    This discussion seems to be about affectionate/sensual bodily contact, which is a total different aspect of touch.  

    As for chair risers : I have to say that in my opinion they are gimmicks, very expensive gimmicks.  I believe the ability to 'rise' to other people lies within ourselves.  It should not rely on physical rising. 
    I am a Scope Community Volunteer Adviser with knowledge of "life"!  Lived experience including employing personal assistants, being gay, sport & leisure inclusion & participation, mental health issues.  

    What is the bravest thing you've ever said? asked the boy. 'Help,' said the horse.  'Asking for help isn't giving up,' said the horse. 'It's refusing to give up.”
  • steve39
    steve39 Member Posts: 52 Connected
    JustPete said:
    I think our perception of being touched needs, in part, to be framed culturally.   Some cultures shy away from touching and showing affection in this way.

    Then we get to a 'disability' perspective.  I am touched each an every day by people whom I have given 'unsaid permission' to touch me - otherwise they would be unable to assist me,  Actually, I hate the wearing of gloves when being assisted (having only started with the COVID pandemic).

    Moving on to being touched by people without 'said/unsaid permission' then I call it out immediately.

    This discussion seems to be about affectionate/sensual bodily contact, which is a total different aspect of touch.  

    As for chair risers : I have to say that in my opinion they are gimmicks, very expensive gimmicks.  I believe the ability to 'rise' to other people lies within ourselves.  It should not rely on physical rising. 
    SORRY but your comment on chair raising is bull as at six foot i find that your normal chairs are made to damn low for my body that has got ankylosing spondylitis plus a load of other issues going on inside of it , I also know that my mum would not be able to get out of her chairs at times with out its being able to raise up behind her , as for touching we all need it weather you like it or not 
  • JustPete
    JustPete Community Volunteer Adviser, Community Co-Production Group Posts: 174 Pioneering
    @steve39 I hope it goes without saying that I respect your opinion :smile: 
    I too have given mine above, stating it is my opinion.

    I think we need to take care on here because there is a thin line between robust discussion (which I love) and 'slightly' abusive tones/language in our discourse (which is not appropriate nor necessary).
    I am a Scope Community Volunteer Adviser with knowledge of "life"!  Lived experience including employing personal assistants, being gay, sport & leisure inclusion & participation, mental health issues.  

    What is the bravest thing you've ever said? asked the boy. 'Help,' said the horse.  'Asking for help isn't giving up,' said the horse. 'It's refusing to give up.”
  • steve39
    steve39 Member Posts: 52 Connected
    JustPete said:
    @steve39 I hope it goes without saying that I respect your opinion :smile: 
    I too have given mine above, stating it is my opinion.

    I think we need to take care on here because there is a thin line between robust discussion (which I love) and 'slightly' abusive tones/language in our discourse (which is not appropriate nor necessary).
    Hi Mike ive got no problem with you if you got no prob's with me lol it's soon going to be Christmas 
  • Tori_Scope
    Tori_Scope Posts: 9,644 Scope online community team
    I'm sorry to hear about the breakdown of your marriage @Pugie. That must have been really difficult to cope with, on top of becoming disabled. 
    It's awful to think i may never be held or cuddled again for rest of my life.
    I do think it's possible that you could have this again :) As you say, everyone needs love and support, and that includes disabled people. Many disabled people are in happy, fulfilling relationships. 

    I completely appreciate that you wouldn't want to move on too quickly, and need time to process what happened, but would you consider starting to date again? 

    Sometimes, becoming more social in a non-romantic sense can help people to increase their confidence in 'getting back out there' and meeting new people. Are you a member of any social groups or clubs?
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  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,478 Disability Gamechanger
    Coming into this discussion late in the day..... first, unless things have changed dramatically, @newborn mentions, there's no such thing as a 'stroking massage.' Well as a physio student we were taught to do such massage from the shoulder to above the contralateral buttock, then repeat this from the opposite shoulder to again above the contralateral buttock. This was especially used prior to back exercises as it helped relax tense muscles.
    Moving on @steve39 - I'm sorry that you have ankylosing spondylitis, but I can't particularly see why you have taken issue with JustPete & your replies appear contradictory..... chair risers wouldn't work for you, but help your Mum. However, I feel JustPete's comment was to identify that we don't need to physically 'rise' to others expectations, that's all. If you have an issue with a member's post, please flag, & report it; the Scope team will then look into it. I don't think any offence was meant by either of you.
  • steve39
    steve39 Member Posts: 52 Connected
    Pugie said:
    Sadly when i became disabled my husband just suddenly stopped holding me when i actually needed it the most. Gradually i :po:) our relationship fell apart because we lost that closeness and bond. He then just stopped caring and started ignoring me and our marriage was over. Some people just can't handle been around disabled people. My husband kept saying"i wish you were normal again" this hurt me deeply, because nobody chooses to be disabled but we have to deal with it. I remember night after night i cried because i needed to be held. It's awful to think i may never be held or cuddled again for rest of my life. Everyone needs love and support let alone touch. Just because we have disabilities we are no different emotionally, we still have all the needs and wants just like anyone. 
    I Know it#s NOT MUCH BUT THIS IS TOTALLY FOR YOU OK  :p:D:D:(:(o:)o:) hopefully one day you will have a hell of a lot more than just the virtual things that i can send on this thing,

    you dont say what your Dis is but mine our anklylosing spondylites, tourettes n fibromyalgia plus a few more bits, and i'm afraid to say when things got a bit to much i just walked out of my family after 23 yrs
    because i just was not the same person as i was when i first married her
    if you want to talk more i'm always open on this to messages x
  • steve39
    steve39 Member Posts: 52 Connected
    Pugie said:
    Sadly when i became disabled my husband just suddenly stopped holding me when i actually needed it the most. Gradually i noticed our relationship fell apart because we lost that closeness and bond. He then just stopped caring and started ignoring me and our marriage was over. Some people just can't handle been around disabled people. My husband kept saying"i wish you were normal again" this hurt me deeply, because nobody chooses to be disabled but we have to deal with it. I remember night after night i cried because i needed to be held. It's awful to think i may never be held or cuddled again for rest of my life. Everyone needs love and support let alone touch. Just because we have disabilities we are no different emotionally, we still have 
    Remember this You Are Normal in all the things that you think and feel but men Need to know that it is a two way street and that they are not just there for one thing, and don't ever think that you are not going to be held and loved just like you were before in some close future time ok 
  • steve39
    steve39 Member Posts: 52 Connected
    chiarieds said:
    Coming into this discussion late in the day..... first, unless things have changed dramatically, @newborn mentions, there's no such thing as a 'stroking massage.' Well as a physio student we were taught to do such massage from the shoulder to above the contralateral buttock, then repeat this from the opposite shoulder to again above the contralateral buttock. This was especially used prior to back exercises as it helped relax tense muscles.
    Moving on @steve39 - I'm sorry that you have ankylosing spondylitis, but I can't particularly see why you have taken issue with JustPete & your replies appear contradictory..... chair risers wouldn't work for you, but help your Mum. However, I feel JustPete's comment was to identify that we don't need to physically 'rise' to others expectations, that's all. If you have an issue with a member's post, please flag, & report it; the Scope team will then look into it. I don't think any offence was meant by eit

    chiarieds i'm sorry but it is you that has got thing ars over tit if you read the post properly instead of being a know it all you will see that pete was DISSING THE NEED AND AFFECT OF chair raising, and i was actually putting him right as to that affect by quoting facts about myself having raised my chairs (I,E, normal chairs being to low for me) and my mum having bought things for herself, and NO, I Donot have any Quall with Pete at all because as he said he was just giving his own opinion, thank you very much and i gave mine
    now as for a stroking massage i have passed my city and guilds and NOCN Level 1 in Massage and you are right in saying that there is one although my technique would be different to yours as i was taught by a different school, now that is out of the way hopefully we will not have any arguments either but Please Read peoples post properly First
  • steve39
    steve39 Member Posts: 52 Connected
    Pugie said:
    steve39 said:
    I Know it#s NOT MUCH BUT THIS IS TOTALLY FOR YOU OK  :p:D:D:(:(o:)o:) hopefully one day you will have a hell of a lot more than just the virtual things that i can send on this thing,

    you dont say what your Dis is but mine our anklylosing spondylites, tourettes n fibromyalgia plus a few more bits, and i'm afraid to say when things got a bit to much i just walked out of my family after 23 yrs
    because i just was not the same person as i was when i first married her
    if you want to talk more i'm always open on this to messages x 

    Thanks for your lovely message Steve. 
    I'll DM you thank you for your lovely encouraging words. 

    your more young lady because it happens to be true  for everyone, but i'll look forwards to you messaging me, pugie xx
  • Tori_Scope
    Tori_Scope Posts: 9,644 Scope online community team
    Hi @steve39,

    This is just a reminder to be mindful of the tone you use on the community. Misunderstandings do of course happen, but please ensure that all posts and comments you make remain civil and respectful in tone. 

    As stated in our house rules:
    Please make sure your messages respect others’ views and suggestions, even if you do not agree with them.

    Please be careful what you say. Not everyone shares the same sense of humour!
    Online Community Coordinator, she/her

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  • Tori_Scope
    Tori_Scope Posts: 9,644 Scope online community team
    Hi @Pugie :) 

    I completely understand that you wouldn't want to cause any disruption by getting into a new relationship. Hopefully as your son gets older, you'll be able to have more open discussions with him about relationships and so on.

    It can definitely be difficult to meet new people. Are you a member of any social groups or clubs? 

    Online dating has its perks and downfalls for sure. You definitely have to be quite careful, and take precautions to keep yourself safe. That being said, it can be a good way of gaining confidence in chatting to people again, and potentially meeting up with likeminded people. Although there are many horror stories, there are lots of positive ones too. I met my partner on a dating app unexpectedly!
    i have very little confidence because my husband forever told me how ugly i was and how nobody would put up with me but him and how lucky i was to have him. It's taken so much time to try and repair the damage done..
    That's terrible. I'm sorry he said those things, as I can only imagine how hurtful that must still be. Have you talked to anyone about how he spoke to you? 
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  • newborn
    newborn Member Posts: 746 Pioneering
    Once I had a reflexology woman who was willing to be extremely gentle touching my feet, and once a woman actually offered hand massage which really was just stroking.  The type of massage they do in spas would terrify me. 
     I think people who are themselves fit and strong and athletic truly cannot accept in their heads that an adult human could be as delicate as a newly hatched chick.   It is not that they mean to hurt anyone but they absolutely cannot comprehend:  You can by all means grab hold of the bird and pummel and press and force all your weight onto it, but don't expect it to stay alive for more than a few seconds!!

Brightness

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