More then books required

Below is a copy of a woman's journal that she shared on the Muscular Dystrophy Association website.  http://transitions.mda.org/blog/love-or-not-love-part
I suggest that you read it in full on the above link or scroll or read the red sections on my blog posts below before reading my comments.

Her perspective on the impact that disability has had on her expectations and experience (or lack of) of dating, romantic relationships and sex, as well as everything tied up with these things is common to many disabled people, but not necessarily talked about. I find that so much of this woman's life and perspective parallels my own, besides the obvious commonality of being female and effected by some form of Muscular Dystrophy. Along with each excerpt of this woman's entry I will add my own reflections and observations.

"I have self-efficacy, and I have detailed planning for nearly all aspects of my life except the “love relationship.” I aspire to have it in my adult life but I really have not had any positive expectation for it. It is only on this aspect I would tend to self-stigmatize. 

 This young woman has so many things in common with me that when I first read this piece I actually thought "has someone stolen my life?". But then I considered again what reason did I have for thinking that my own experience or thoughts and feelings around these topics was unique. This revelation or reminder sent me off in search of others stories and musings on this area.

Although many of my friends (who have different types of disability) are engaging in committed relationships happily with people with/without a disability, I find it difficult to overcome my psychological barriers whenever I think of the situations for which I need intensive caregiving, and that my life span is threatened by the disability.

In some ways our own experiences and thought processes are just as much of a barrier to building relationships, whether romantic or platonic. Although I don't have statistics to back me up, I would guess the number of people who struggle with shyness and other social difficulties are much higher in the disabled community, particularly those with physical disabilities or significant physical limitations.

My friend said that disability could not take away my right to engage in love relationships. He then asked whether I have already met a person on whom I have a crush. When I answered “yes, but he does not have a disability,” he immediately asked, “It seems that basically you don’t accept your disability at the outset. Then how could you expect that he would accept your disability and appreciate your inner beauty?”

Those that have a significant role in our lives, whether or disabled or not have a big impact on how we view ourselves in terms of self confidence, social skills and other aspects. But when it comes to the expectations and experiences around dating and relationships and how successful or not an individual is it seems to be beyond the positive or otherwise input from our social and family circle.

Yes, confidence plays a big part in how attractive someone can seem. But the greater impact of media and wider social forces on shaping the impression of what or who is attractive has an even bigger impact. Both our self impression and the expectations others have in  seeking a potential relationship partner are significantly influenced by these publicized standards.

The questions raised by my friend have made me experience deep distress and confusion. What is meant by “accepting my disability”? Does it mean doing whatever a person without a disability would do? I do not think so. I considered myself as having been adjusted to my disability quite well; otherwise, I could not survive the painful surgery, numerous clinics, chronic pain and fatigue throughout the years, and enjoy a fruitful university life now. However, it is the reality that I need intensive caregiving for daily life, an issue that would complicate dating and marriage considerably.

 The opinion that relationships are impacted or made less likely by being a recipient of care from support people and living with other realities of disabilities is entirely correct, based on research and anecdotal experience. But I have also found there are definite exceptions, not easy to find but there are relationships blossoming between disabled couples and couples where one partner is disabled and the other not. Possibly the ability to remain optimistic and see potential for ways of working around obstacles comes with time and perspective, even if it remains hypothetical for myself at this stage. 

You may say that people cannot stigmatize you due to your need for caregiving. However, it is one of the central aspects in my life that cannot be eliminated simply by attitudinal change in me and in others. To me, stigma and dating is not an easy question to be solved. We could not say Person A is not stigmatizing Person B with mental illness because A dates B; nor A is stigmatizing B since A does not intend to choose B as a dating partner even though these factors have significant relationships as shown in research.
Paradoxically, I always advocate for stigma reduction and social inclusion, but I am always confused about a situation — it is a normal human instinct that we tend to choose “beautiful”/”good” things based on our feelings and interests. We choose the university programs we like; we tend to befriend people we like. Just now, from the perspective of dating, I suddenly found that I regard my disability as a relatively “bad” attribute. I could not even go shopping or hold hands with and hug a boyfriend easily. If such human instinct actually originates from evolution, then how could we effectively control or modify such principles by those “stigma-reduction programs”? In fact, what and who defines “beauty” and what is “good”?

To some degree I agree that some of these standards and perceptions are based on inherent qualities or needs but at the same time there are many situations common not just related to disability in relationships, where peoples perceptions and actions go beyond inbuilt assumptions. If peoples instinct to run away from danger can be overcome in the name of saving someone else then I think there is definite possibility that there will be individuals who can see past the disabled exterior. It is just a matter of finding these admittedly scarce individuals.

A few months ago when I went for a regular medical checkup, the doctor asked if I had a boyfriend and she said she would be very happy for me if I had found my Mr. Right. But then she chatted with my mom, saying that my future husband could take over the caregiving from my parents as they are getting older. Finding a man who would be willing to be my caregiver would be important for my future life.

This assumption from the doctor is understandable but misguided as it adds to the pressure and assumptions that families and individuals with disabilities build up in regard to what they expect of a partner of someone with a disability.

I felt so frustrated and sad when I heard this. I wonder, if my future love relationship would be no different from just receiving “caregiving”? Couldn’t it involve simple romantic love at first?

I agree that it would be frustrating to have someone assume that the partner/significant other would have to take on the care-giving role. As with any relationship the roles and 'responsibilities' of each partner in the relationship need to be negotiated and clear so that both know how things work, not saying that there is not room for re negotiation as time goes by. The motivation or pressure placed on a significant other to fulfill support or care giving role is potentially more common in other countries where the societal and governmental support systems provide less financial assistance for such needs. 

Nowadays, “marriage” would not be a must for an adult — and being single would not lead to diminished growth (I suppose).

For me marriage is not a essential or an expectation that I am expecting. I guess it is very personal to peoples world view and what priority is placed on certain things. But it seems that marriage is just another outcome of societal structures used to define what a 'normal' life path is made up of. Maybe if individuals who struggle with relationships as a result in some part of their disability could look at the idea of relationships in a more broad and creative way we might be able to find someone or something that can fill the gap that so many of us feel.                                                                                                                                                                                                                                                

However, marriage and childbirth would be important experiences for me since I really want to experience the unique feeling of giving birth to a baby and nurturing him/her. I have been growing up under the endless, unconditional love and care of my mother. I also wish to transfer the love and care received from my mother to my offspring. But I will not be able to give birth to a baby as my disability is heritable and my health conditions could not support the whole process of pregnancy and going through labor. The experience of being a mother is something that I cannot obtain by simply reading books.

Having the curiosity and need to experience and understand certain things are definitely goes beyond what can be objectively or understood or learned, particularly when it comes to relationships emotions and physical experiences. Everyone has their own priorities when it comes to what it is that they most feel the absence of, but I would say very few individuals would escape experiencing the 'obsession' with related topics. For me it is about finding someone to trust and be close with and to feel secure and confident in their company, this means I feel much more connected with people on an emotional and mental level than necessarily focusing on their physical aspects.

It is not like reading numerous books and watching videos of a rat dissection in order to compensate for the loss of my ability to perform a rat dissection in biology class in secondary school due to my disability. It is about the irreplaceable emotional bonding with offspring.
Author’s note: The blog is modified from one of my reflective journals from the practicum last semester. Part B on this topic will be posted next time. Could you share with me your thoughts on dating and love relationships for people with disabilities? Do cultural factors play a role? Leave me comments and share with me your thoughts and feelings in the comment box below!"

More and more disabled people are finding a voice either on the internet or in the mainstream media where they are expressing opinions, experiences and ambitions that are still sometimes shocking and unexpected to mainstream community members. I think in order for individuals in our community who have disabilities to feel more confident and hopeful when it comes to serious relationships it will take a shift in societies attitudes about what being attractive, sexual and being in a relationship means. The greatest contributor to my peace of mind and sense of possibility has been the process of opening my thinking to a greater range of possibilities of what it means to be in a relationship who it is you're in a relationship with and how the connection is established between the individuals.