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"Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails." The Bible, 1 Corinthians 13:4-8.

 

Disability, Courtship, Love, and Intimacy.

I have written the following article, which explores some of the barriers that Disabled People face in their search for Courtship, Love, and Intimacy.

I will start by briefly introducing myself. My name is Steve, I am in my early forties and I live in the East Midlands. When people meet me for the first time, the one thing that they probably notice about me most is my disability. I have Cerebral Palsy, which means I have poor coordination of all my limbs, and have a significant speech impairment. I get around by using a powered wheelchair and I need assistance with ordinary daily living activities. I have been successful academically, in employment, and in living an independent life.
 
However, I have been unsuccessful in courtship and intimacy with women and I have to confess at this point that I am struggling with the issue of singleness. I am a Christian and I have tried online Christian dating sites, but all I seem to get back from my emails is either a pleasant “no thank you” or no reply. It is like they see my disability and metaphorically they run a mile. Such rejection becomes difficult to handle after a while and I find I lose the confidence to keep trying. Ultimately, I am looking for that special soul mate and companion, someone to share with in life’s highs and lows.  I am longing; to know the closeness of a kiss and the warmth of a cuddle, to be precious in my lover’s sight, to communicate with a knowing glance, to lose all sense of time in conversation with my soul-mate, to know the intimacy of union that is blessed between husband and wife, and to be there for my soul-mate through good times and bad.
 
At this point I find I have two options. Option one, give up, get depressed, cut people off, and withdraw into my own little world of self-pity and isolation. This will make my life very bleak and I will have a heavy heart.  Option two, keep trying to find my soul-mate, keep positive, try to understand the problems, and seek solutions. I will be honest, I have tried option one, and it is not a nice place to be. Therefore, I am doing option two, and as part of it I find myself writing this article out of my own experience, frustration, and search for understanding in these matters. I believe the things that I have discovered maybe helpful to other disabled people, so I thought I would share them here with you.
 
Just on a side note; I have to deal with rejection and pity from people on a regular basis in my life. Empathy is something I can handle, but pity is something I really do not need. Empathy is often characterized as the ability to "put oneself into another's shoes", or to in some way experience the outlook or emotions of another being within oneself. Pity is a feeling of sorrow for the misfortunes of others; "disabled people are too often objects of pity". This is a huge difference and very important to me.
 
Firstly, I wish to explore the personal barriers that my disability raises in forming relationships that might lead to courtship and intimacy. This part is difficult for me to write because I am frightened that I am giving away my personal secrets, but here goes. People with Cerebral Palsy can experience involuntary bodily responses to stressful or emotional situations, which can be seen in the exacerbation of spasticity or speech difficulties. Basically, because you become aware of the situation, then your body becomes more uncontrollable at the exact moment you want to appear cool, calm, and collected. So catching the gaze of a person you are attracted to in the context of a social encounter can make interaction more difficult as your bodily control worsens. This makes life hard because it is a vicious circle, you become aware that you need to be calm, that is stressful, and your bodily control worsens, so you get more stressed, then your bodily control gets even worse, and on it goes. It is like your own body is betraying the secrets of your inner emotions. The only comfort I have is that most people are not aware enough to make the connections, but after reading this they may now be able to!
 
For me I would say that the most difficult aspect of having Cerebral Palsy is my speech impairment. It is the route of most of my frustrations in one way or another. Society’s expectation is that everyone is able to express themselves eloquently and efficiently through speech. Most people who come across someone like myself, with a significant speech impairment, they simply do not know how to deal with the situation. I think this leads some people to avoid entering into conversation with me in order to avoid their own fears about entering into an unfamiliar situation and the embarrassment they perceive it might cause.
 
My speech is understood by those people who know me, although some people are better at understanding me than others. I have a theory on this; I do not believe it is about their ability to listen, but rather there ability to interpret and used the context to workout the bits they do not understand.  I do get frustrated at times when people do not engage their brain when trying to understand me. Just the other day I was in the kitchen trying to tell my carer what I wanted to eat, and the carer came back with I wanted her to put the cat out. I do not even own a flaming cat, and even if I did, what has a cat got to do with wanting something to eat? An extreme example, but it is true and it infuriates me because it defies logical thinking.  Most of the time, when people do not understand me, I am happy to repeat myself or to think of another way of saying the same thing until I am understood. Even when people pretend to understand me, I can usually tell by the split second pause while they try to decide whether to say that they have not understood, before nodding in agreement. The best policy if you do not understand someone with a speech impairment is to ask them to repeat themselves, and keep asking until you understand them.
 
The point that I wanted to get to is that my speech impairment makes it very difficult for me whenever meeting people for the first time. Not only because of any preconceptions they may have which I will come on to later, but because they simply will not be used to my speech and therefore are very likely to have a harder time understanding me than people who already know me. Put this into the context of a social setting where you might expect to meet new people, a pub, a party, or at church, you have lots of people talking and possibly music playing, which creates loads of background noise. My speech, background noise, and talking to someone new; I would say that the likelihood of me being understood is precisely zero.  In these situations it is like you feel trapped in your own body.
 
There is the whole self confidence thing, after years of experiences of not being understood by people, when the rare opportunity does arise to talk to someone that you might be interested in starting a relationship with, you believe that they are not going to understand your speech, so you just clam up and say as little as possible.  Also there is the underlying feelings of why would an attractive woman be interested in someone with such a screwed-up body as mine. Therefore, because you believe this encounter will not go anywhere, you do not try in any real way to engage with them, and guess what, the encounter goes nowhere. I believe this is known as a self fulfilling prophecy.  I believe this happens when I am feeling depressed about all this stuff, wanting intimacy so badly, being rejected so much, you lose the will to keep trying at times. I believe I am an intelligent and interesting person, and if I did not have a speech impairment then I would have much more self-confidence and be much more out spoken.
 
I believe being in a wheelchair poses yet another set of difficulties when it comes to the social setting. If people are standing at a bar for example talking you are at a different height to them sitting down. In a wheelchair you need more space, so you can not always position yourself were you might like without causing an obstruction to other people, and you can not mingle in a crowded room without people having to clear a path for you. Also it is difficult to get physically close to anyone to simply put an arm around someone, initiate a hug or kiss, or to walk along holding hands. And on top of all this you have got all the usual accessibility issues and limitations attributed to using a wheelchair.
 
Moving on to broader issues, discrimination against disabled people is nothing new. The Disability Discrimination Act (DDA) 1995 and 2005 is testimony to this and aims to end the discrimination that many disabled people face. This Act now gives disabled people rights in the areas of: employment, education, access to goods, facilities and services, buying or renting property, and functions of public bodies, etc. In love however, personal preferences or prejudices reflecting social attitudes toward disability and the desirability of disabled people are unrestricted. Access to courtship and intimacy for disabled people therefore cannot rely on legislation. Basically the DDA is not going to enforce for me any rights to a girlfriend, love, marriage, sexual intimacy, or 2.4 children!
 
I believe that our western society and culture has created many barriers for disabled people with regards to forming romantic relationships. Disabled people often have experienced social isolation in adolescence where ones sexual identity is being formed and when the learning of sexual social etiquette is taking place. This often affects their ability to negotiate intimacy as young adults. Going through the ‘special’ education system, other than during the day at school, I was totally isolated from social settings where I might interact with my peer adolescents. Parents can often send negative messages to disabled children and adolescents about their possibility of a sexual life and marriage as adults. Even parents who are supportive in every other way can feed into this exclusion, although often from the need to protect their child from the heartache of what they see as future rejection. Fortunately, I personally did not experience this, but general over protectiveness probably impacted on my self confidence in social settings.  This possibly, in part, explains my shyness and difficulty in starting conversations with people that I do not know. The fact that there are no sexual role models in the media and few in everyday life that show disabled people how to negotiate romance and sexual intimacy with others. The lack of disability and sexuality education and counselling while growing up can be an issue. Sex education was not on the curriculum at my ‘special’ school.
 
Our society’s ideals of attractiveness, which are most explicitly conveyed via the Media; the obsession that only the perfect body is beautiful, the expectations of normal bodily function and control often contribute to a negative body image for disabled people, A lot of disabled people feel that these unattainable ideals clearly affects their possibilities in establishing sexual intimacy with others. In fact it is not uncommon for disabled people to admit to having a poor body image at one time or another. I will admit this is something I have had to overcome.  Another barrier for disabled men is our society’s masculine male gender role expectations such as competitiveness, strength, control, endurance and independence. Men are traditionally expected to take the role of protector and provider for his family. This can be difficult for both disabled men and their potential partners to see them in this role.
 
As someone with Cerebral Palsy I believe we are swimming against the tide of our society by not having total control over one’s own body when society demands total control over one’s self. I can identify with the concept that all relationships operate on making conscious and unconscious choices. Something that can possibly make it difficult for many people to have a really intimate relationship with a person with a substantial disability is that on some unconscious level, the person with a disability is seen as childlike.  While this is not a comfortable thought, if you cannot go to the toilet by yourself, if you cannot feed yourself, if you are uncoordinated, if you’re not graceful, those are all attributes of a little child. People may not necessarily be aware of this concept consciously, but they may have a certain uneasiness with the idea of uniting their intimate self with the disabled person’s intimate self. Intimacy has the quality of being comfortable and having a close association with your partner, therefore this contradiction can cause difficulties in forming an intimate relationship. This may partly explain why some disabled people find it easier to form intimate relationships with people who have the same or similar disability. I have never ruled out the possibility of a disabled partner for myself, but I have yet to meet the right person.
 
Friendship would seem the obvious way for me as a disabled man to start a relationship with a non-disabled woman. However, from my own experience, I would say this in itself can cause problems as women fear entering into friendship in case they get too involved with the disabled person. This maybe some vain attempt to protect the disabled man from the female friend’s future rejection, if the man tries to move the relationship into something more romantic and intimate. On several occasions I have known women become friendly with me after they have got married and they become at ease with me because they are no longer available, so the whole romance issue is no longer on the agenda for them.
 
There are also the pressures that an able bodied partner of a disabled person will face from society, friends, and family. The attitudes of the general public can be oppressive; an able bodied partner of a disabled person comments, “People stare at us all the time, they talk to him like he's a 6 year old”. Estrangement and avoidance of friends and acquaintances through their uneasiness with disabilities, lack of awareness, or shear prejudice; comments like, “I wouldn’t be seen dead going out with someone like that”. Disapproving parents or future in-laws raising objections about the partner's disability; comments like, “we don’t know what you see in him, he can’t even walk, we hoped you’d do better for yourself”. These are quite vivid examples, but highlight the kind of negative pressure an able bodied partner of a disabled person can encounter, and of course this can be done much more subtly too.
 
Then there is the whole issue of whether or not an able-bodied woman can imagine herself romantically and sexually engaged with someone as disabled as myself. Whether that is being completely turned off by my disability, fears that I would not be able to perform romantically and sexually, or viewing me as a non-sexual being, they do not see me as a potential romantic and sexual partner. For me this is one of the hardest aspects to deal with because I know I am as romantically and sexually able as any other red blooded male might be, so to be judged as being non-sexual from the outset seems incredibly unjustified. I may not have the experience in romance and intimacy, but that is because I have never been given a fair opportunity in this area. I may do things differently to my able-bodied counterparts, but is that enough justification to write me off completely?
 
Some disabled men faced with such rejection and lack of opportunity to enter into any romantic or sexual relationships, do resort to prostitutes and escort agencies in their desperation for sexual intimacy. In this context this simply means access by males to sex with females, i.e. sex is the resource that women own and men desire. This approach is not for me because of my Christian beliefs and the fact that I believe sex without love, romance and an intimate relationship would be pretty awful. The idea of paying someone to do what should be the most loving act between two people, then I can imagine the shear emptiness, isolation, and loneliness that would descend afterwards, I could not go there. However, I can not help having some sympathy with the men who find this is the only avenue open to them to be sexual beings, even if this is a controversial or uneasy practice to consider.  
 
As a committed Christian in this article I have purposefully avoided discussing sexual intimacy as part of a casual or ‘no strings attached’ relationship as it does not fit with my own personal beliefs. However, for many people this is not a consideration, so I will make some comments about sexual intimacy, but for me this would be in the context of a loving marriage. I firmly believe that every adult human being is a sexual being regardless of any disability.  Sex is not just about intercourse, it is also about a special personal relationship and about ways of both giving and receiving pleasure. I think any part of the body can be an erogenous zone if you want it to be and pleasure comes from unexpected journeys. If intimacy and sex are to be at their best, both partners must help each other, and tell each other what they like. The journey to sexual satisfaction and gratification should be both pleasurable and fun, so find pleasant ways of saying what you do not like, suggesting alternatives without discouraging the partner. Encouragement and not criticising is important. Encourage your partner to feel able to look for his or her own pleasure, knowing that this will help both of you. I am not going into any greater detail on sexual intimacy as I do not feel qualified to do so.
 
I would like to explore another controversial subject, the development of romantic and/or intimate relationships between the disabled person and their carer or personal assistant (PA). I know such relationships are deemed inappropriate by Care Standards and the care industry as it undermines professional boundaries and opens the possibility of allegations of sexual abuse, the abuse of power, and the sexual exploitation of women in their role of caring. While these are real dangers, the disabled person and PA relationship does require the PA to; spend a significant amount of time with the disabled person, build up a working relationship with the disabled person and this will require considerable understanding on the PA’s part, and the PA will be involved in the most intimate care needs and maybe privileged to much personal information.  What better way of a disabled person really getting to know a non-disabled person on a deeper level, and it would not be the first time that a relationship has blossomed through such encounters.
 
Therefore, while great care is needed before going down this route, maybe we should think twice before we completely disregard this as a possible avenue to finding a partner? Although as a disabled person, I would suggest that as soon as the disabled person and PA relationship moves beyond the usual PA role, that you cease having or employing that person as your PA. Otherwise you are very likely to have great problems as you cross the personal and professional boundaries, which could have serious implications for you and your PA from Care Standards and the involvement of any care organisation, and this could jeopardize the future of the relationship.  It also removes the potential of misunderstandings between what is being done in the Service User and PA relationship, and what is being done as part of the personal relationship.
 
I have focused mainly on the problems that I, and many other disabled people, face in search of courtship, love, and intimacy, but I now want to consider what might make a relationship work. Obviously, I can only write about what I have read or observed in the area of courtship, love, and intimacy as I have virtually no practical experiences of this; however I believe understanding the problems goes a long way to finding the solutions, therefore, this allows me to consider the positive attributes that might make a relationship work. What I offer here is general guidance and I do not pretend to have all the answers. Also, relationships are as individual as the people themselves, therefore, it is impossible to prescribe one point of view that is right for everyone, so if you disagree with my viewpoint that is fine.
 
In general, successful courtship evolves as individuals meet, connect, discover compatibility, create intimacy, fall in love, experience relationship satisfaction, envision a life together, and become committed to each other. As the relationship progresses, they negotiate and compromise to overcome interpersonal challenges.
 
One of the key attributes that a potential partner looks for is positivity. I find this ironic because after all the frustration that I have already outlined, being positive is a pretty tall order; however, that is what is required of us as disabled people. Partners need us to demonstrate a positive adjustment to our disability and personal strength in meeting the daily challenges our impairments and the world at large presents to us. Some partners have speculated that they might not have become romantically involved if their partner had not displayed such a positive attitude. One comment made by the partner of a paraplegic man that I read, sums this up well, “…he is so internally strong, he seemed to me then so clear thinking, he had such a good attitude, a good perspective, that's what I saw, he was so positive and that's what I remember, then the admiration thing turned into attraction, I think if I had met him in one of his down times, then I'm not sure that I would have, could have been that giving, that open-hearted or open-minded." It is interesting, but not surprising, that positivity attracts potential partners and negativity puts them off.
 
As well as positivity, a potential partner is more likely to be drawn to those who adopt an attitude of independence, self-direction, and self-sufficiency, to the extent that it is possible taking the level of physical disability into account. It seems likely that a disabled person who strives to minimize the impact of their disability on a potential partner would make a more attractive candidate for a long-term relationship than an individual who has come to rely, perhaps to excess, on others. Considering a person with a significant disability, an able-bodied partner will likely be willing to assume a heavier role within their relationship than might usually be the case, such as domestic duties, earning an income, or providing care, they will expect their disabled partner to make contributions to the union which matches with their abilities, and to share in all responsibility when it was feasible.
 
The issue of whether a partner should be the main care provider, I do not know the answer. I suspect there is no one answer and it is something for individual couples to workout between themselves; however, I do have some thoughts on the matter. There are two schools of thought. Some able-bodied partners who involve professional care providers, either full-time or part-time, claim it provides significant relief from managing the physical workload and demands on their time, and helps to separate the intimate relationship from care providing. While other able-bodied partners claim their involvement in care provision was given out of a desire to avoid the intrusiveness of involving a professional care provider. I believe both claims to be true and it is simply a case of to what extent the able-bodied partner is involved in the care provision. I would also say that I personally believe that an able-bodied partner who was not prepared for some degree of involvement in the care provision would by definition not be a suitable partner. If your partner loves you, surely they will want to be involved in the care provision to some degree? Otherwise I can only imagine a rather strange three way partnership.
 
Obviously, courtships and intimate relationships between an able-bodied person and a person with a significant level of disability are possible, otherwise everything I have written here is pointless and my quest would be in vane.  Whatever barriers to developing intimate relationships with persons with a disability may exist, there must be certain qualities and attributes that a potential able-bodied partner may have to enable them to overcome these barriers. I now want to consider what these certain qualities and attributes might be?
 
Disability awareness would be an important and influencing attribute. Whether it is personal or professional prior experience of individuals having physical disabilities, it should allow them to see the person first and not the disability, having had the opportunity of interacting among disabled people this should enable them to see disabled people as individuals with equal status, and leads to the development of positive attitudes to those with disabilities. This can develop a willingness to enter into a dating/romantic relationship with someone with a disability.
 
Personal values about the dignity and worth of all human beings can be another influencing factor. Other qualities and attributes may include maturity, open-mindedness, assertiveness, independence, and resourcefulness. The ability to be flexible and resilient in adapting to a wide range of challenges and to resist negative external social pressure may also be contributing attributes.
 
While we can speculate on what essential qualities and attributes that a potential able-bodied partner may have, and the key attributes of the disabled person, the ultimate and most important aspect has to be the relationship. The quality of the relationship has to be superior to anything else experienced and outweigh the significant challenges imposed by the partner's disability. The quality of the union, as reflected in experiences of love and affection, and the general emotional climate of the relationship, has to result in high levels of relationship satisfaction. It would seem that the successful negotiation of the courtship process should be fuelled by growing or sustained relationship satisfaction. Anything less is very likely to result in the relationship not surviving the challenges imposed by the partner's disability.
 
I could now go into various ways one may meet a potential partner, but I think that is fairly obvious and I do not believe that I have any great revelations to offer in this area, however there is one piece of good advice that I will share. It is good to move outside ones own comfort zone at least one time per week. The point being that if you do not try to meet a potential partner, then you are much less likely to ever have a partner.
 
I want to conclude on a positive note, having a significant disability does not remove the possibility of courtship, love, and intimacy; and where there is the possibility, there is also hope. In hope my ultimate heart's desire is to share my life with a sincere, loving, Christian person This special person must on the whole feel good about themselves and about life, as well as enthusiastic about a serious, long-term monogamous relationship; someone with a good personality, who is caring, sensitive, intelligent, and confident. I am praying for a partner and loving companion who is fun, adventurous, courageous, and truly excited about life and a beautiful relationship with one man. This person should be willing to give and receive love, within a nurturing long-term relationship, based upon Christian values. It is very important to me that this person is able to accept completely my disability and all that goes with it. Physically I would prefer a partner who is comfortable with their body and has a healthy interest in their appearance. What is important is what the person looks like on the inside. Any intelligent, kind-hearted person who is truly excited about love and a beautiful relationship could bring joy into my life. I hope I could return such qualities into their life to make our relationship meaningful, allowing us to become totally fulfilled with a deep love for life and for each other.
 
I hope this article has been practically useful and has been as thought provoking to you as it as been for me writing it. Finally, I need to acknowledge that I used some concepts and quotes from two research papers to put this article together; The Search for Sexual Intimacy for Men with Cerebral Palsy by Russell P. Shuttleworth, Ph.D, and Postinjury Marriage to Men with Spinal Cord Injury: Women's Perspectives on Making a Commitment by Maureen S. Milligan, M.Sc. and Aldred H. Neufeldt, Ph.D.
 
Written: October 2008.
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