…your physical disability makes it really loud and clear that
– Dr. Natalie Truba
you’re not “just like your peers”…
Connection and Belonging
Perhaps one of the biggest challenges for the individual with Duchenne is the social isolation many encounter daily.
Between the challenges of physical distance with peers, misunderstood behaviors and the clear dismissal of disabilities in our society, the obstacles individuals with Duchenne face to create human relationships can seem insurmountable. Thankfully, a little education can go a long way.
Peers
The social separation often begins early in life. Kids with Duchenne just can’t move fast enough to keep up with others and many can’t get close enough to be part of conversations. While it may not be an intentional exclusion, the fact remains that kids with Duchenne have less face time with their peers.
Once the powerchair is introduced, not only are kids with Duchenne isolated more by peer choice, but they are also isolated from inaccessible public areas. Even if the school is accessible, they may have to leave the main group of peers to use an elevator, to have privacy to address bathroom needs, transportation, and maybe even school entry. As for visiting friends at the house after school, it’s near impossible to find a home that is ADA compliant, let alone find transportation from someone with an accessible vehicle.
In addition to the physical components, Duchenne’s lack of dystrophin also affects the brain and emotions. These, in turn, frequently present as OCD, ADHD, ODD, anxiety, depression and more… ultimately affecting behaviors and relationships.
Intimacy and Romance
When it comes to romance and intimate relationships, individuals with Duchenne are often excluded again. Most individuals with disabilities – including those with Duchenne – Long for an intimate relationship just like those without Duchenne, but the roadblocks are numerous.
When individuals with Duchenne just begin to socialize, they need a caregiver with them, which is often mom or an adult caregiver. Instead, it may be a good idea for adolescents and adults to recruit a couple friends to help out when socializing, although this carries its own set of roadblocks.
Apart from the practical aspects of dating, the bias and stigma from society is very real. We see a substantial lack of sexual education for our disabled community and a lack of conversations about sex in the clinic. Many individuals with Duchenne are left on their own to determine how to explore their own body with limited movements, special considerations for partner sex, and how to find a caregiver who is comfortable with assisting during intimate times.
The Larger Community
Kids with Duchenne typically do not meet society’s expectations, especially those rules about “good behavior” and “following directions.” In fact, they are often excluded, reprimanded or punished for their behaviors – behaviors that are rooted in their disability and far beyond their control.
Despite all enumerated challenges, many of our individuals with Duchenne are very talented and gifted. We can lay claim to role models of many kinds: musicians, paralympic sports champions, PhDs, advocates, business owners and more.
And yet, the lack of representation and inclusion in mainstream society persists. It speaks quite loudly not only to the able-bodied community, but to the disabled community as well. It tells us that the achievements and successes of individuals with disabilities just aren’t valuable.
Unfortunately, this message also hits closer to home. This cultural bias and inaction discourage some adults in our community from engaging meaningfully and independently with our society. The lack of representation often challenges the self-worth and self-efficacy of our children with Duchenne, ultimately prompting a cascade of mental health challenges.
More to Consider…