about the author:
The author is a parent of a transgender individual with Duchenne Muscular Dystrophy. Due to the sensitive nature of this topic, the author wishes to remain anonymous.
Transgender with Duchenne
Individuals with DMD have unique challenges if they are not comfortable in the gender assigned to them at birth.
Of course, there are many issues that any individual wishing to transition faces – such as name changes, hormonal treatments, etc. – but these issues are common to any person and family undergoing transition and not specific to our Duchenne community.
At the Mercy of Caregivers
You see, Duchenne exponentially complicates the process of transitioning because of the dependency that individuals with Duchenne have on others.
The comfort level of parents, caregivers and guardians plays a major role – and in some cases a decisive role – in the ability of the individual to transition. Frankly, parents, guardians and caregivers often have the final say whether someone with Duchenne can transition or not. In other words, the individual with Duchenne may not be in control of this self-defining decision.
Below are the major issues that I – as the parent of a transgender individual with Duchenne – have perceived related to transitioning with Duchenne.
An individual may wish to approach this transition gradually and cautiously and such an approach is made difficult by physical dependency.
For example, an individual may wish to try on the clothing or makeup of the opposite gender but because this requires assistance from others, it cannot be done on a private, trial basis.
If – and when – the individual wishes to transition, because of physical dependency again, it requires the cooperation of others, usually parents. Others will have to agree to dressing the individual differently, for example, and their (dis)comfort with that request may therefore take the foreground.
The DMD individual is also frequently dependent on others financially, often living in the same home as their parents. Similar to the issue of physical dependency, this makes the DMD individual potentially concerned about major issues.
Due to this financial dependency, many individuals with Duchenne are unable to move out of their parents’ home. If parents vehemently disagree with the concept of transition and refuse to help, then anxiety, depression and resentment can certainly begin to fester for the individual with Duchenne. And it will undoubtedly affect dynamics within the entire family.
Tragically, some parents have simply told their sons that this transition cannot occur in their house. As the DMD individual has few other options, they are obliged to continue living in a role in which they are neither happy nor comfortable.
By not allowing them this decision – so crucial to one’s identity – parents have taken away a crucial aspect of independence, that of self-determination, which is far more important than any physical function.
Another Painful Loss
For multiple social reasons, the transition is often difficult for the parents as well. For me, as a parent, the two main issues I had were a sense of loss of my own, and my concerns about how others would treat her.
As we all know, DMD is a series of painful losses. For the parents of a transgender DMD child, there can be now an additional loss of the image of the boy and son they knew.
I loved my son and although my daughter was – of course – the same person who I also loved, I missed my son deeply.
Potential social stigma was a concern for me as well. I worried that she was making life even harder for herself due to the social stigma of being transgender.
Unfortunately, this turned out to be true with some people now feeling free to insult her and treat her badly – for which she had few defenses. Although there were just a few, even one person demoralizing my daughter is too many.
Courage and Joy
The decision to transition is extremely personal and requires enormous courage. Despite all these challenges and hardships, she was able to transition. Transitioning is one of – if not the – greatest joy in her life.
I am so very happy that my daughter was able to fulfill this deep desire of hers. I only regret that I was cautious, uncertain and even discouraging when she first expressed it to me.
If I were to do it again, I would thank her for her courage and celebrate her transition with her from the beginning. She is my beloved child in any form – now a beautiful young woman, inside and out.