When a child is born to you, you have many expectations of what they will do of who they will be. Things you always wished you could do. Things that you never had the opportunity or aptitude to do. But children may "disappoint" because they were not the person you expected them to be. Perhaps you are a musician and your child gravitates towards athletics. Perhaps you are athletic and your child gravitates toward art. You are a person who enjoys being outdoors and your child likes nothing more than to sit and read. Some expectations die because they are exceeded in different ways. Some expectations die because they are unfilfilled, perhaps because the child hasn't the requisite abilities. The disconnect between expectations and reality causes a kind of "suffering" for those with the expectations although the child may be oblivious to the disconnect and "suffering" because unless it is communicated to them that they are not meeting our expectations, they grow, happy with their lives, their interests, etc.
Now to want an athlete and have an artist may bum you out a bit, but to desire a typical child and have a child with Down syndrome, for example, has thrown people's lives into total disarray.
Parents may feel great fear when a child is born with an intellectual disability. I know of mothers who have abandoned their children on this basis. I also know the abandoned individuals with disabilities as adults, many of whom may have an apartment in the community, hold a job and other than wishing they had more money (a common malaise) are quite happy with their lives. Those same mothers who could not face having a child with an intellectual disability, actually lived an identical life to the child they abandoned.
This leads us to the point of the way the child with Down syndrome, for example, is perceived. Yes they will make increased demands on their family in terms of supervision, in terms of not being able to have a decent job and so forth. However, in their own minds, they will see themselves as doing fine. With children with disabilities for a while at least, they may be oblivious to their difference because they know of nothing other than their life experience. As they grow and notice the differences in those around them, this may cause an internal dissonance or actual suffering created by the environment or how they perceive themselves in reference to the enviornment. Sure, many will desire such things as getting married, having their own home, etc. and depending upon their ability levels as well as the ability levels and creativity of those in their enviornment, this may or may not be a possiblity. The issue is the problem of equating disability with suffering particularly at points where they are not necessarily related.
Metaphorically,it reminds me of issues related to racism. For many groups of people at different times in different places, racism causes or caused them to experience discrimination and that causes suffering. It is important to state that there is not suffering in simply being a member of a racial group in and of itself (which can be a significant difference in making the comparison to disability in some of its forms). Suffering comes from being a certain ethnicity in the midst of a society that is discriminatory against that ethnicity. If I were to equate suffering with race X, you might correct me saying that that may be the experience of people of race X but it needn't be their experience. To always discuss race X under the heading of suffering would imply to the outsider that there is indeed something of a connection between race X and suffering that is unavoidable. Suffering is not the societally imposed consequence of being race X, it is simply an observed characteristic of being race X, because look at all the people in history who were race X who experienced suffering (albeit imposed by society). That does not diminish the reality of the suffering experienced by race X. It was and is real. However, if I take the next step and purposefully link race X with suffering, to some degree I may be complicit in that suffering. In the case of persons with disability, say Down syndrome again (who are arguably not physically suffering from their disability), people will then try to eliminate suffering they assume people with Down syndrome are experiencing using what they would call "humanitarian" means through such practices as abortion.
I do not want to deny that when people are suffering, they are indeed suffering. There are specific conditions that persons with disabilities might have that would cause physical suffering in a variety of different ways and I do not want to trivialize that suffering. There is also the kind of suffering that parents of children with disabilities might face which is also very real. Parenting children with autism, for example, can be incredibly difficult.
However, I do not want to project suffering onto people when they are either, 1) not suffering in their own minds, their own experience, or 2) are suffering because of something that I am doing that I can stop doing.
As stated, people may suffer when they have a disability for a variety of reasons. I may suffer due to my actual disability, perhaps it causes pain to me. I may suffer because of the disability of my child who has a disability as might my family suffer with this child. People may suffer due to the social consequences of disability to themselves or to their friends and family.
We must be careful, however, not to equate disability and suffering, particularly in situations when it is the social consequences of disabilty that lead to suffering. To equate suffering and social consequences indicates a giving over to societal effects of disability. Now I can understand that social consequences are the reality, however, at the same time if I refuse to equate suffering and disability on this level, perhaps I take the first step in changing what is considered common sensical and conventional wisdom. "Of course people with disabilities suffer from their disability" we say. But that is not necessarily true. Many people with intellectual disabilities, for example, are unaware they even have a disability let alone being distressed about it. I know of others who have physical disabilities who have come to understand themselves with their differences and are not suffering physical pain from their physical disability. They themselves have told me that they are doing fine and just wish "People would treat me like I am normal." We must be careful, therefore in equating suffering and disability and only talking about diability in the context of suffering.
McNair
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