Facing the lack of ability

What can be expected from a physically handicapped girl living under extreme poverty in a remote village of Tangdar– Disappointments, Miseries and Frustrations? Twenty two years ago Rehana was born to very poor parents. As if the curse of abject poverty was not enough, Rehana was diagnosed to be suffering from a rare disease afflicting limbs called BAT hand, since her birth. Unlike other children of her age, poor Rehana could not use her hands to eat, play or write. She longed to lead a normal life and during her initial years could not even comprehend as to why she is different from other children. As the years passed by, she realized that she will have to live with her disability. But her parents were a great support. With no options available, Rehana decided not to be dictated by her fate but to live life on her terms.

She had a strong desire to study. Her father used to shoulder her to the nearby school and mother used to assist her for the whole day in the school. She practiced hard to write with toes of her foot. After failing in her first few attempts, she practiced hard and mastered the art of writing with her feet. Having cleared a major obstacle through her dogged spirit and relentless parental support, Rehana set her eyes on the next major challenge facing her – taking her Board Exams and clearing them. The ‘Never Say Die’ spirit in Rehana with parental backing helped her to move forward in her career trajectory. Here are some challenges & coping strategies of parents of physically challenged children:

Financial Constraints

Regarding financial constraints, one of the parents said: “When I visited the doctor, he suggested that I get a hearing aid for my hearing impaired child. However, I face financial constraints to purchase this hearing aid. So, when it comes to caring for my physically challenged child, money is my biggest issue and relatives are also not doing anything concrete to remit us, actually the help is just spoken but we are not experiencing it physically. “In addition, another participant reverberated: “I have to take my daughter to the hospital for screening every four months, but I hardly follow this schedule advised by the physicians because of a lack of funds. As you can see, I am handicapped to leave my physically challenged child alone and go to work. That makes it really challenging for me to take care of her. Moreover, I am a single mother myself”. The responses vividly demonstrate that every parent faces financial constraints when caring for their physically challenged children in some way. These comments demonstrate again that these parents lack the means to provide their children with the necessary medical assistance and assistive aids respectively.

Single Parenting

One of the single mother responded; “My husband left me after I gave birth to a daughter with foot deformity. Due to the severity of my child’s disability, I am not working so I find it very difficult to take care of my child”. The remarks infer that these parents lack the necessary social support of a husband to assist their children financially.

Exclusionary Practices & Psychological Barriers

One of the respondents expressed her opinion as: “My child frequently complains a lot about his friends when he comes home. They label him from the perspective of his handicap. He is an odd man out in the class. The worst aspect is that certain teachers occasionally make disparaging remarks about my physically challenged son. Hearing these suppressing remarks from my son makes me feel emotionally drained. This has impacted my relation with my office colleagues and relatives because of my frequent emotional outbursts. The wife of this respondent added “A lot of people do not want to come closer to us especially when we attend social gatherings and this really makes me feel depressed. I am very close to two of the women in my neighborhood, they got pregnant and they avoided meeting me on one pretext or another simply because they believed they will also give birth to a disabled child like mine”. The comments infer that some of the children’s classmates, friends and teachers have created psychological barriers by labeling these children from their disability perspective. The responses also demonstrate that people do not want to associate themselves with these physically challenged children as well as their parents. When people around display emotional insulation and ignore these hapless souls they feel discriminated and marginalized.

Fatigue

One of the respondents opined: “Caring for a physically challenged child will last until I die, so definitely I don’t have much time to rest at all and this is killing me slowly. The only time I get a little rest is when he goes to a special school, still his wellbeing haunts me like a nightmare. While caring for my physically challenged child, I engage in a diverse range of activities. For example, I have to dry-clean his clothes, brush his teeth, bathe him, and transport him to and fro from school. As a result, by evening I am overly drained, and this continues for weeks, months and years with no light available”.These answers from the participants show that parents spend much of their time caring for their physically challenged children. The amount of time required to care for these children result in considerable frustration among the parents. Parental errands include bathing, preparing meals for special diets, feeding, and attending to personal hygiene needs. This shows that the parents have a large number of responsibilities to share while handling these children and in the process they forget to care for themselves.

Remoteness

One of the respondents opined: “I frequently remain away from the social gatherings. The reason is that if I attend these functions, I won’t be able to find someone to look after my physically challenged child. I hardly invest time for myself, and taking care of my physically challenged child has put a stop to my social life and I don’t remember the last time I attended some marriage function, I always remain caged. This is due to the fact that, if I leave, I am unsure of finding some reliable person who will properly care for my physically challenged child on my behalf”. The remarks from these parents suggest that they have to delimit their social participation in order to care for their disabled children.
Coping Strategies of Parents with Physically Challenged Children

Social Support

Most of the parents communicated about the support they get from their families, relatives and friends. This is what one parent has to say about support: “Sometimes, if I have to leave for work and come home late, I will ask my younger brother to pick up my physically challenged child from school. I feel fortunate to have my younger brother in my life who has been helpful from the very beginning” Another participant who lacked social support was somewhat pessimistic in his outlook:“ I frequently lock myself in my room and wail As I start crying , I ask myself things like, “Why me? What wrong have I done? Am I the only one that is experiencing this infinite pain and agony? In fact, there are times when I want to commit suicide. When I give a second thought; I hear a voice asking me to remain buoyant in these turbulent currents and I also get some counseling from the senior citizens in my locality who tell me to care for my child”.

Children’s Mental Resilience

Under this theme, a respondent stressed that: “My physically challenged child can occasionally carry out some basic daily tasks by himself. For instance, eating on his own and brushing his teeth. This allows me to spend some time caring for the other kids. This gives me the impression that caring for him wasn’t a waste of time” These comments infer that these parents are not required to carry out all the necessary tasks for their disabled children.

Spirituality

This is what a respondent shared under this theme: “I have an unpunctuated faith in the mercy of Lord, and doing so keeps me going forward without a lot of stress. I really think that God is the source of my life and hope, and I always receive the courage I need to face my challenges day in and out. This suggests that spirituality is able to help these parents lower their stress levels to cope with their challenges. In conclusion, it appears from these statements that the majority of parents claimed to have developed effective coping strategies for handling the difficulties they experience.

Guidance & Counseling

Respondents were asked if they have received any guidance or counseling from the school counselor.. The majority of the respondents said they had never received guidance or counseling from the school
counselor. Here are some of the respondent’s comments substantiating this assertion. This is what a parent has to say: “I am aware that there are school counselors in some prestigious schools. However, I’m not sure if this school has one. Till date I have not received any type of counseling from the school counselor because my child is a disabled. I once spoke with the school counselor. This occurred when my child once tried to physically harm a classmate who was making fun of him. When that occurred, the school counselor was informed of the situation his approach was casual, he did not take the issue serious. The said counselor lacked the basic qualification in guidance and counseling. But there are some brighter spots to follow. One of the respondents expressed a different viewpoint, stating: “I am aware that this school has a counselor. She and I have spoken several times about my child’s developmental needs. She’s actually been helpful from the beginning. This remark indicates that this parent sought support from the school counselor regarding the child’s disability. Additionally, it implies that, this parent acknowledged that, the school counselor had previously assisted her by providing counseling services.

Dr Showkat Rashid Wani, Senior Coordinator , Directorate of Distance Education, University of Kashmir

{Note: Names may not be real}