We already use genetic engineering to create things like crops that can resist changes in climate, and bacteria that can produce drugs. But in March last year, a group of leading geneticists called for a temporary prohibition on gene-editing in embryos. However, just a month later, researchers in China published the results of a controversial experiment – where they had modified the DNA of human embryos. Though the embryos they worked on were ‘damaged’ – that is, they could not have grown into living babies – it was a huge step for the scientific community. And, in the UK, a governmental body got ready to hand out licenses for creating a particular kind of genetically-engineered human – using a technique the US already tried and banned 13 years ago. It seems more and more likely that genetic enhancements to humans will become a reality – and with this new step in the UK, 2015 could well have been a historic year for the science.
Our decisions on what we feel is morally right with regards genetic enhancements in humans will affect generations to come. My friend Lizi Atkinson, a Philosophy graduate from the University of York, presents her essay contemplating whether or not we should respect the desire of a deaf couple to have a deaf child.
Do we have a reason to respect the desire of a deaf couple who wish their child to be deaf?
In this essay I will argue that we do have a reason to respect the desire of a deaf couple who wish their child to be deaf although this does not necessarily mean that we will agree with their action. The first step I will take in order to support my answer is to show that the initial intuitions that may make a person answer ‘no’ to the essay title are based on the individual model of disability, which I believe to be mistaken. I will then endeavour to explain Hull’s model of disability which I deem to be stronger and show why this is the case. With a new model of disability in place, reasons to respect the couple’s desire, for example inclusion in the deaf community, become clear and I will explicate these reasons. I will finish by explaining why although we can respect the couple’s desire to have a deaf baby, this is ultimately idealistic and as such we cannot agree with their action.
Background of the argument
The focus of this essay is based on a real-life case study; I will briefly explain this example in order to give a deeper understanding of the context of this essay. In 2002 a lesbian couple in America sparked controversy by seeking out a sperm donor with a family history of deafness to maximise the chances of having a deaf child. This decision was greeted by a cold reception, as the majority of people could not understand the couple’s motivation for deliberately trying to bring a disabled child into the world (Sparrow 2002: 11).
Initial intuitions about the issue
In order to delve deeper into the debate I must first show where initial negative responses to the question could come from. I must first emphasise that there are a number of different ideas about what ‘impairment’ is, for example Tremain who said that knowledge and power are the causes of impairment (2002: 34). Despite the importance of a discussion about impairment I do not have the scope in the essay to focus on these and will assume a biological account of impairment, which claims that impairment is a biological functional limitation. It could be argued that we do not have a reason to respect the desire of a deaf couple to wish their child to be deaf because the couple is intentionally bringing their child into the world disabled. The child in virtue of the disability will have fewer opportunities than children who are able to hear and this seems plainly unfair. The child will be disabled if born unable to hear and thus we have no reason to respect the deaf couple’s desire and their decision would be wrong.
The hostility to the couple’s decision assumes the correctness of the individual model of disability, this is the definition of The World Health Organisation (in Hull 1998: 207-8). According to this model the problems that disabled people face are caused primarily or solely from their impairment, disability is simply the consequence of impairment. It would seem therefore in the case of the deaf couple that by trying to maximise the chances of having a child with an impairment they are maximising the chances of having a disabled child.
Problems with the individual model of disability
I will now explain why the individual model of disability should not be employed and thus why the initial negative intuitions about the decision of the deaf couple are based on false assumptions. The individual model of disability fails to take into consideration social factors involved in disability. Although there are some functional limitations in all disabled people this does not necessarily that all impaired people are disabled. As Hull (1998: 200) argues functional limitation does not guarantee disadvantage, for instance using a wheelchair for movement would not be problematic if all the streets and buildings had step free access, thus a person in a wheelchair would not, in this case, be seen as disabled. Another example is people who have a mild functional limitation with their vision, these people are not seen as disabled because they have glasses which stop them from suffering because of their impairment, thus social factors are sometimes involved in instances of disability. The importance of social factors in disability clearly shows that the individual model of disability cannot be an adequate account of disability, and thus claims about the deaf couple based on this model of disability are based on false assumptions and are themselves false.
Now that I have shown that the initial intuitions about the deaf couple’s desires are irrelevant I will endeavour to show which view of disability I see to be the strongest and how applying this model of disability to the case study, which is the focus of this essay, can show we do have a reason to respect the desire of a deaf couple who wish their child to be deaf.
Further discussion in the definition of disability and a stronger model
On the other end of the spectrum to the individual model of disability is the social model; a movement of disabled people led by Oliver promoted this model (Terzi, 2004:141). It argues that disability is a purely social construct. Disability is a relation between an individual and her social environment, those viewed as being ‘disabled’ are deliberately excluded, and this exclusion comes from both people’s actions and the built environment. In contrast to the individual model this definition denies any causal role between impairment and disability, leaving the source of disability to oppression and segregation.
I do not find this model of disability to be adequate either, as it ignores the importance of impairment in disability, as Terzi stresses (2004: 150) it is important to have a functional limitation in a model of disability because otherwise any arbitrary cases of social exclusion could see somebody as deemed disabled. Terzi expanded her argument with a thought experiment that imagined how a person with a physical limitation would be seen in a world with no social barriers or restrictions, if they would face no difficulties then disability could be seen as socially constructed. Terzi explains how a blind person in this world would still struggle with understanding non-verbal communication, they would also face the disadvantages and problems that come from the fatigue and discomfort that blindness can cause. From this it appears obvious that impairment does have a place in some instances of disability.
A model, which involves both social, and biological factors in disability, is Hull’s model. This model says that we should not overlook the physical reality of functional limitation but that many of the disadvantages faced by disabled people are “social disadvantages of a remediable kind” (1998: 199). For Hull, to be disabled is to be disadvantaged, and thus unable to do something, this could be from either a social or physical limitation. If the disadvantage comes from social factors then society is to blame for the disability, but there are cases where the functional limitation causes the person to be unable to do something no matter the provisions put in place by society. I feel this model to be the strongest as it avoids the problems of both the social and individual models. Now that I have defended what I deem to be the strongest model of disability, I will apply this model to the case of the deaf parents to show that we do have a reason for respecting their desire to have a deaf child.
Applying this definition of disability to deafness
Although, as Hull argues, there are examples where not all disability is social I believe that in the example of deafness the disadvantage comes from society. Deaf people would not be disabled in the world of Terzi’s thought experiment; this can be partly demonstrated by the strength of the deaf community. The deaf community do not see themselves as disabled, rather as a minority group, they have their own language and culture and can survive perfectly well amongst each other. (Lawson, 1981: 31). Another example demonstrating the social aspect in deafness is the story of Martha’s vineyard, a real place where a genetic mutation meant that a high percentage of the population were born deaf. The amount of deaf people on the vineyard inspired the residents to develop their own sign language that was spoken by both hearing and deaf inhabitants. Deafness was never considered to be a handicap, and the residents lived happily and safely (Groce 1985: 1-5). It seems therefore from these factors that deafness is a socially constructed disability.
So, applying Hull’s disadvantage criteria to deaf people shows that they are disabled (as they are disadvantaged), but this disadvantage primarily comes from society, we have not put in place enough measures to cater for deaf people, and if we had then they would not longer be deemed disabled.
Why do we have a reason to respect the couples desire to have a deaf child?
Now that we can see that deafness is a disability primarily because of society and that the disability does not spring merely from functional limitation, I will lay out what I see to be some convincing reasons why we should respect the desire of a deaf couple to maximise the chances of having a deaf child.
As I mentioned earlier, there is a very strong deaf community, which deaf people see as a minority culture. The couple could be seen as wanting their child to be able to get the most out of this culture which they deem to offer the most valuable opportunities for their child. The deaf community have a language, so the child is not missing out on communication, thus as Sparrow argues (2002: 14) the couple see themselves as giving their child the best opportunities by enabling them to be part of the deaf community. We do not judge parents who wish for their child to be part of other minority cultures, for instance religion, so maybe we do have a reason to respect the desire of the couple to have a deaf child.
In response to this claim it could be argued that the child could be part of the deaf community without actually having the functional limitation, why subject the child to not being able to hear when they could benefit from both cultures?
It appears this is not as simple as it seems, although in some cases a hearing child could be included, the deaf community can be hostile to those who can hear, and there are conditions that must be met in order to be a member of the community (Higgins, 1991: 24-9). These are identification, shared experience, participation and membership. A hearing child with deaf parents may not be able to identify with the deaf community, they may struggle in sharing the full experience as they do not share the impairment. Therefore, a hearing child in the deaf community would not be wholly involved and accepted. The child may feel alienated from both the deaf and hearing cultures.
If society banished all barriers, by learning sign language, and making the world a more accessible place for deaf people then a deaf child would not be seen as disabled.
From this point of view it can seem we do have a reason to respect the desire of a pair of deaf parents who want a deaf child, they see their community as providing the best life and opportunities for their child, the child is not disabled within the deaf community. As Sparrow argued (2002: 15) the parents may feel they can be more effective as parents to a deaf baby. A hearing child growing up in a deaf family may face problems with communication, and be limited in their ability to communicate orally, putting them at a disadvantage at school. All parents want the most for their baby and this requires participation from parents. If they do not see their impairment as a disability, and feel they could raise their child better if it was deaf then it appears we do have a reason to respect and empathise with their desire.
Although the existence of the deaf community and Hull’s definitions of disability give us reason to respect the desire of a deaf couple who wish their child to be deaf, I do not believe this implies that this course of action should be taken.
I see that although the reasons for respecting the desire are correct, they are too idealistic. The child is seen as disabled because of society and although this doesn’t seem fair the way things are now aren’t going to dramatically change overnight. The child may have a wealth of opportunities from within the deaf community but at certain points in their life they will have to venture outside of this setting, and at these points the fact that the child cannot hear will be problematic.
I understand the couple’s desire to have a deaf baby, and in the world of Terzi’s thought experiment I would agree with the course of action, as it could be the same as choosing to teach your child to live in a religious community. Despite this, the fact is that if the child decides to leave the religious group they won’t find themselves all of a sudden disabled, whereas a deaf child leaving the deaf community would be at a loss. In the unfortunate event of something happening to the parents the deaf baby may be taken away from the deaf community, and really struggle with disability.
We can respect the desire of parents to let their children play in the park unsupervised but this doesn’t mean that the child will be perfectly safe, there exist people who could put the child in danger. All parents must make decisions about how to raise their child in response to the world we live in, the deaf couple must see that it would not be maximally beneficial to deliberately try to bring a deaf child into the world.
I have therefore shown that although we do have a reason to respect the desire of a deaf couple to want a deaf baby this does not mean that we can agree with the action of trying to find a deaf donor in order to maximise the chances of fulfilling this desire.
On Hull’s view of disability the child would be disabled because of social factors, and thus initial intuitions about the wrongness can be overcome. Despite this, and the existence of the deaf community, a child born deaf will struggle to live a maximally beneficial within the current society, therefore I cannot agree with the decision to try to maximise the chances of having a deaf baby.