“It is hard for me to give hugs as I cannot raise my arms. However, my mom picks them up and hugs me.” – Teenager with Duchenne muscular dystrophy
In 1992, the United Nations designated December 3rd as International Day of Disabled Persons (also known as International Day of Persons with Disabilities, International Day of People with Disabilities and World Disability Day). According to its website, this awareness day “aims to promote the rights and well-being of persons with disabilities in all spheres of society…and to increase awareness of the situation of persons with disabilities in every aspect of political, social, economic and cultural life.”
Many of the patients PTC has served over the years become disabled due to their rare diseases. For instance, patients with Duchenne muscular dystrophy often lose mobility function and use wheelchairs. Patients with aromatic L-amino decarboxylase (AADC) deficiency can suffer from movement disorders such as dystonia (twitching) or hypokinesia (decreased body movements). Some find it challenging to enjoy the special moments in life that others take for granted… Challenging, but not impossible.
We decided to make use of this opportunity to “increase awareness of the situation of persons with disabilities” by checking in with some of our patients and their caregivers. Each person expressed the desire to be regarded and treated like any other person: “I want people to know I can do anything they can, it just takes me longer or I have to do it differently,” explains one adult patient with Duchenne.
“My disability…significantly impacts my time management skills since I take longer to get dressed, go to the bathroom, and shower. I have trouble brushing my teeth and many activities seen as easy are challenging.”
Time management complications are a recurring theme for caregivers, too, especially when it comes to travel for clinical trials. One caregiver lists: shower chair, BiPap machine with oxygen, a patient lift for transfer from bed to wheelchair, and lots of medications as regular travel companions. Another parent told us about trips to the doctor that take about two hours out the day when needed.
Communication is also a challenge. “He doesn’t always use the right words to describe his thoughts or know the right time to add to a conversation,” a parent explains.
Interpersonal interaction can be strained for people with disabilities and their caregivers. “Most people are aware I have special needs but not always sensitive to it,” says one patient.
Caregivers lament that strangers are not always careful how they treat the disabled: “We have seen people take the handicapped parking (spot) and not have a placard. At the stores, we have experienced people cutting in front of my son and closing doors in front of him.”
“Often times, they don’t talk to our son in a power chair at all and if they do, they treat him like he’s much younger than he is,” a caregiver tells us. “We advocate every single day for access to buildings and better treatment for people with disabilities overall. Schools also don’t understand his needs very well.”
Patients and caregivers say it isn’t all bad. Many have friends, family members and colleagues who provide support. However, there’s still a need to take advantage of awareness days like this one to send a message about how people with disabilities are more than the sum of their needs and challenges.
“It is hard for me to give hugs as I cannot raise my arms. However, my mom picks them up and hugs me. I am a regular person who uses a power chair to move around. I have feelings and think and breathe and do the same things (you) do,” says a teenager with Duchenne, who wishes people wouldn’t stare at him but would, instead, ask him about his disability.
We asked, and we’re glad we did! PTC is grateful to these brave patients and caregivers for sharing their perspectives on this important day. We are honored to know and to serve you.