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When One’s Body Doesn’t Follow One’s Will: Physical Disabilities and the Lessons We Learn

By: Tzivy Ross  

Imagine that you awaken one morning and wish to start your day with eagerness and renewal. You reach toward your washing cup to fulfill your first morning ritual, but your hands cannot sway and your fingers cannot grasp. Instead, they remain leaden in your lap. So you wait patiently for someone to come and assist you, holding your hands awkwardly over a basin as they pour the water over your fingers. And you watch the water as little droplets splash and spill their way over the basin and onto your clothing, under your skin, until they form their own river of tears and you cannot wipe them away because your hands cannot do your bidding. 

Living with a physical disability creates enormous challenges for those affected and for those around them. The feelings of fear, helplessness and powerlessness produced when one’s body does not follow one’s will cannot be described adequately with words. As a society we have been conditioned to value external characteristics such as physical appearance, agility, fitness, strength and independence. When these features are disabled in some way it takes tremendous courage and will to develop one’s internal characteristics and function adaptively with a level of independence, dignity and spirit. 

What can we do? 
First and foremost, every opportunity should be made available to those living with a disability to receive the appropriate accommodation to achieve a maximum level of independence. There have been incredible advances in the fields of occupational and physical therapy to allow for adaptive devices to enhance basic functioning and activities for daily living. A piece of therapeutic equipment can make the difference between a person operating their own phone or being dependent on someone else for a simple phone call, reading a book at their own pace or relying on someone else to turn their pages. 

Wheelchair accessibility is crucial to allow for maximum independence and integration. The Jewish community is sadly not as advanced in this area as it should be. Synagogues, mikvaos [ritualariums], yeshivot [schools] and simcha [celebration] halls should all have easy wheelchair accessibility. While this is understandably very costly to undertake, at minimum it should be implemented whenever there is construction of new buildings and sites or at expansion of existing ones. I have heard a wheelchair-bound man with multiple sclerosis, a recognized scholar and father of several children, describe his experience of being carried in his wheelchair over a flight of steps to attend a family celebration as “humiliating” and “excruciating.” The greatest gift that can be bestowed to any individual is the maintenance of their dignity, decorum and self-respect. This certainly applies even more so to those with physical disabilities. 

Accessing Services 
In addition to the emotional duress families are placed under when one of its members is disabled, there can be devastating financial consequences as well. Exploring long-term care that is medically appropriate and financially feasible can be an overwhelming experience without outside assistance. If one member of a couple becomes disabled through accident, illness or aging and suddenly required long-term care, some of the choices that couples are presented with can be especially heartbreaking. They can potentially include drastic measures such as acquiring a civil divorce or a ‘letter of spousal refusal’ abdicating responsibility for an individual’s disabled spouse in order to procure entitlement and services without impoverishing the entire family. For Jewish families who must grapple with these painful choices, some of the devastating impact could be mitigated if assistance were available in the form of culturally sensitive professionals who could help them explore their options within a framework of understanding of marriage and family obligations according to Jewish law and culture. 

Empathy vs. Pity 
Individuals who have a physical disability certainly deserve our compassion and caring. What they don’t need is our pity. When relating to a physically disabled person it is so important to see beyond their disability. A person is not defined by their disability, nor should they be solely identified by it. An individual’s disability can certainly be acknowledged, but need not be a perpetual focus. 

What is so remarkable about individuals struggling with a physical disability is the manner in which they are forced to transcend the limitations of their disability, often conjuring up reserves of strength, wisdom and character. When a person cannot rely upon the external physical characteristics that are so often lauded by society, his or her internal characteristics can and must take center stage. It is simply a manner of being compelled to understand that at the end of the day we must all be much more than the casing we are contained in. 

Feeling the Pain 
When one witnesses an individual with a physical disability yearn for the sensation of a prick on his toe, a pinch on his leg or a pounding on his arm, you understand the remarkable blessing that is the sensation of pain. When an individual with quadriplegia suffers a fever, pain would be the most welcome sensation as it would isolate the source of a potential infection, identify a problem and hasten appropriate treatment. For the quadriplegic individual, pain is longed for, yet elusive. 

Those with physical disabilities understand that it is through necessary pain that we heal and we grow. Ironically, most of us spend our lives extremely intent on avoidance of necessary pain. Currently in the Orthodox Jewish community there are many with vastly differing views on managing the many social problems affecting our children and families. Some prefer to avoid discussion of these problems so as to evade the sadness and pain that inevitably accompanies it. Others recognize that only be exposing the problems and eliciting necessary pain can there be healing, problem-solving and growth. 

May we all merit the day when our pain can turn to joy, when those with physical disabilities can heal and our community’s wonderful chesed [acts of kindness] to disabled individuals and others is no longer needed. 

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