Some thoughts on saying "special" and "heart warrior" in the CHD community: real and false identity

Austin E. Wilmot, M.S.W., L.C.S.W.

What does it mean to regard someone or something as "special"? This article is concerned with the specific way in which "special" acts as a substitution of something false for something real, like saying "special needs" instead of "disabled". To use the word "special" is to not talk about something else at the same time. While there are plenty of ways that the term "special" is appropriate for use in our everyday language, there is also room for reflection on what the origin of the need for "special" may be, especially when used within the CHD community, or in its popular derivative form, "heart warrior". Even with the best of intentions, the use of "special" may cause unintentional harm or offense, or, at the least, be counterproductive. The same is true of using the label "heart warrior", which, as discussed in another article, evokes specific associations with the word "warrior" that are simply false when divorced from the flip side of the warrior/worrier dialectic coin.

Regarding a child as "special" or "special needs" may have the consequence of:

1. suggesting that the child has more needs than another child when, in fact, the child is seeking accommodation or extra support to meet the same needs as anyone else

2. not conveying specific information about the child's disability or condition

3. saying I'd rather not say "disabled" or "disability", producing shame and (internalized) stigma

4. not offering the same legal protections as the legal term "disabled"

5. assigning a label before the child has a choice in the matter of identifying themselves

6. limiting a child's own understanding of their reality

7. imbuing the child with the need to "be special" as internalized from the parents' need for the child to take on that rigid role, contributing to a problematic sense of entitlement, preoccupation with one's functioning, passivity, among other issues in family and life, both during childhood and evolving into adulthood

Regarding a child as a "heart warrior" may have the consequence of:

1. not conveying specific information about the child's CHD or condition

2. evoking specific associations to "warrior" that substitute for something more real and true, producing shame and (internalized) stigma

3. assigning a label before the child has a choice in the matter, and, most often, would not use if not for the parental investment

4. limiting a child's own understanding of their reality

5. imbuing the child with the need to "be a heart warrior", internalizing anything that would resemble their reality as having heart worries (Warriors don't worry or have fears, do they?)

While it is understandable with how common "heart warrior" has become that parents and others have integrated it into their lexicon, children with CHD have their own feelings about the term (perhaps as wanting to be known as themselves, not their disease) and should be allowed to decide for themselves if and how they use it. The above possibilities are situated within a larger context of whether the family is a closed-system or open-system when it comes to talking about feelings. This could make the difference between whether a child feels pressure to adopt a false self or genuinely resonates with certain language around their identity. Here, it is what "heart warrior" does not talk about that is the overriding concern because it is the realities of "what sucks" about having CHD that characterize the felt experience for the child. Being a warrior is a fantasy. Parents may prefer to think of their child as a warrior than as someone with vulnerabilities and fears for which they are helpless, in a certain sense, to take away. Building a healthy sense of identity, understanding and an open-system of self-regulation for both parent and child comes from the joint bravery to not shy away or distract from unavoidable, difficult truths.