Several years ago, I overheard a conversation between two children playing in the school of the ALYN Hospital Pediatric and Adolescent Rehabilitation Center. The first child, Or, announced confidently that he intends on taking the other child, Esther, to be his wife. Esther, far from impressed, primly replied: “I’ll never marry you! You don’t observe the Shabbat!” Giggling at the exchange, I felt a sense of accomplishment at this witty, age-appropriate banter between the two.
Anyone looking from the outside would have probably seen children who, in a different day and age, would be considered worthy of pity. Six-year-old Esther was paralyzed from the neck down, and Or had skeletal deformities. Both children were dependent on portable mechanical respirators. Despite these harsh facts, their disabilities played no role in this exchange. They were simply having fun. Their medical challenges and the limitations imposed upon them were just another fact of life for these two friends.
Looking at Esther and Or, I realized that their parents, teachers, caregivers, and society at large are tasked with a mission larger than simply caring for their physical needs: we all have a responsibility to create a community and a culture in which these young people’s personal values dictate their futures, rather than their disabilities.
Contrary to popular opinion, impairment and disability are not purely physical; rather, they are predominantly a reflection of the subjective and that indefinable gap between our own personal expectations, and who we really are. Children who are raised as objects of pity, will probably internalize this perception, and act accordingly. Individuals pitied as children are more likely to become needy adults, never having been challenged to hold themselves to a high standard of achievement.
To succeed in helping our patients become active, independent adults, it is not enough to provide medication, therapies, and assistive devices. We must help the children to build their characters. This can only be achieved via the developmental milestones we call “play.” In practicing and engaging in age-appropriate games, children acquire the social skills, confidence, empathy, and joy necessary to become mature adults.
Prescribing fun for children
As the physician and psychoanalyst, DW Winnicot wrote in Playing and Reality, 2005, “it is in playing and only in playing that the individual child or adult is able to be creative and to use the whole personality, and it is only in being creative that the individual discovers the self.”
If we wish to raise well-adjusted children with the life-skills they will need as adults, we must stop feeling sorry for them and learn instead to treat them as we would any other child. If we wish to change the future of children like Or and Esther, we must push the medical professionals dealing with child development and rehabilitation into the sphere of fun and games.
Disability is just one single aspect of the larger whole called growing up. Warmth, love, clear boundaries, and encouragement to explore and enjoy life are all equally as, if not more important aspects of life for children with disabilities, than for their peers who are “typically developed” (as children without disabilities are referred to). Play is the tool to experience and practice these abilities.IN AN age when modern medicine and technology are advancing at breakneck speed, the gap between being disabled and able-bodied no longer depends entirely on physical ability. Each year, new technologies allow people with challenges to catch up with their non-disabled peers, and perhaps, even to exceed them.
All these converge towards participation, which is the ultimate goal of rehabilitation.
When Or and Esther were playing at their school at ALYN Hospital, they were still excluded and separated from other children their age, limited only to mixing with other children with similar life experiences. Both children, I am happy to say, later left the sheltered environment and integrated into regular schools, where they could indeed participate in a peer environment.
Even with advanced technology and the best medicine, physical disabilities still constitute significant challenges; yet the difference between limitations, impairments, and disability is the way society treats those who face them. If we level the playing field, everyone wins. And in pediatric rehabilitation, this literally comes down to child’s play.
In an age when play and computer literacy overlap and are interchangeable, when video games and virtual reality enable everyone to experience a presence beyond the physical here and now, people with disabilities have a chance to participate on a level playing field. Accessories, adaptable controllers, avatars and motion recognition can become incredible tools in the aim of helping children participate in age-appropriate activities. Many adults frown upon children having too much “screen time,” but for some children, who would not be able to play soccer and do martial arts, the virtual world is a gate to participation and equality.
Children with disabilities do need special help while growing up. They do require special support to become well-adjusted adults and equal members of society. They also need to find a way to express their unique personalities, develop their sense of self-worth, and have their voices heard. Raising them merely on sympathy, pity, and charity, rather than love, respect, and encouragement will sideline them from mainstream society. Opening the doors to playing together as youngsters will make all the difference.
Or, Esther, and the other children who themselves require the knowledge and expertise of ALYN Hospital are, first and foremost, youngsters with the same need for love, acceptance, fun and games. It is not an indulgence; it is what they need in order to live up to their full potential.
The writer is director-general of ALYN Hospital Pediatric and Adolescent Rehabilitation Center.