Shortly after parents learn their newborn infant is deaf, they need to become acquainted with knowledge that is relevant to the education of deaf children. In a short period of time parents are supposed to become the most knowledgeable person, capable of making life altering choices on behalf of their child.
The content of such information and guidance, however, can vary widely depending on the perspective taken. This can lead to conflicting information. Where international guidelines for early intervention promote that parents, positioned as collaborative partners, receive full and unbiased information and appropriate guidance according to the family’s wishes, practice learns that information and guidance—particularly in first-world countries where early cochlear implantation is a realistic option. In practice, the information and guidance tend to be biased towards hearing and speaking. Information and guidance with regard to the inclusion of sign language is often conveyed only in the margin.
What we know
Available research suggests the importance of considering morals for these matters. Passing on information is not only about conveying content about a topic. Knowledge is inextricably linked to morality. For example, when doctors convey information about being deaf, they do so primarily from within a hospital’s institutional moral perspective. That perspective, amongst others, endorses the idea that it is good to help people cure or get better, in a medical way. However, parents, might well have a completely different morals perspective that, for example, prioritizes their child’s feelings of acceptance and love. The parents may prefer the child express themselves in the way that suits them best.
Recent research showed how especially information with regard to ‘the best interest’ of the child that is given without attention, let alone recognition, of the parents’ values, aspirations and strengths, can cause a tension that results in lower quality mother-infant interactions, at least temporarily. These lower quality interactions negatively influence the child’s development.
What we don’t know
For parents, the experience of receiving one-sided or conflicting information on the best interest for their child can be very unsettling. Especially when, they are relying on information and knowledge gathering to make life altering choices for their deaf child. It makes their decision-making process difficult. Even though the information itself may be conveyed with the best intentions, it can lead to unwanted disempowering effects, resulting in parents who are more insecure rather than more knowledgeable.
Moral perspectives are typically unspoken, but they form the invisible context of everyday life, which also effects service provision. When intervention systems build their information based on moral perspectives that do not match those of the parents, the experience of conflict can arise and can have detrimental effects.
Acknowledging the moral perspectives at play is a necessary step in the process of information conveying. It constitutes the starting point for a collaborative and active search for a common moral ground between parents and service providers. This relates to what is stressed in international guidelines: exploring families’ values, aspirations and strengths and take these as a guide for further intervention. A common moral ground will make service provision more supporting and effective, and will diminish negative effects related to experiences with conflicting information and perspectives.
This means that every one of us, whether we are a parent, a service provider, or a scientist, should be conscious, transparent and critical about the moral perspectives we take when we think, inform and make decisions about deaf children’s futures. Efforts should not concentrate on trying to ‘protect’ parents from receiving conflicting information or perspectives per se, i.e. knowledge traditions should not be abandoned, rather parents should be well-guided in the process of discovering all the relevant knowledge and moral perspectives available. This enables parents to make these perspectives meaningful when tied to their own background and moral perspectives.
To service providers, the consequent advice would be to remind them that the parent’s moral order should be allowed to prevail during service provision and not the system’s institutional moral order. To parents, it is recommended to ask service providers about the moral perspectives that they base their advice on, to explore the moral perspectives you find important to base your decisions on and to get acquainted with all possible perspectives. Even though confrontation with some of them might be a little bit awkward in the beginning, whatever decision you make afterwards, it will be better informed and less conflicted.
Posted on April 18, 2019 by
Vrije Universiteit Brussel
Department of Psychology