The Adult with Acquired Disability

A blog entry by
Dr. Samuel N. Mathew,
Executive Director, NISH, Trivandrum, India
Director, RIPMR, Thrissur, India

I often say this when I talk about disability: “We are all candidates for disability everyday”. None of us are immune to disability from an accident, infection, disease, or aging . Human life experience consists of one or more of these situations. Some of us escape it, others go through it. There is no sure way to avoid them although precautions can help a lot. If the experience is not fatal, there is a chance that you might end up with the loss of function of a body part or reduced function. The result could be impairment to one of the sensory organs, or cognition or mobility. That means loss of hearing, speech, vision, mobility, cognition. Medical intervention is the first response and we term it a disability when it is beyond the realm of medical intervention. If medicine can heal us, if surgery can restore our function, if therapy can regain the ability, we all would want to get it done fast. To be more emphatic, we should try it. But life’s reality is that there are things that are beyond the current reach of medical or surgical intervention or therapeutic techniques. We all agree that we have come a long way from the crude ways of medical treatment in the past centuries and today we have equipment that were unthinkable back then. Everyday new discoveries and remedies come out of research labs. But a lot more is yet to be discovered, conquered. And I am sure we will. The progress is accelerated with the joining of hands of medical research with technological inventions in computers and communications.

 

When an adult acquires a disability, he or she undergoes a one way change in his life for rest of his life. A person who lost his speech because of a stroke awakes to the reality that he is no longer able to express his needs or emotions naturally as before. A person who loses his hearing from an accident realizes that he won’t be able to hear the speech from others or enjoy a musical note or not even carry on a piece of conversation which came naturally to him previously. A person who is paralyzed from a degenerating disease such as ALS or muscular dystrophy realizes that he is unable to move around as he has been doing all his life. This will have huge trauma on the psyche of the person. He is being denied a faculty which he took for granted. He is devastated thinking about losing his productive, easy going life. This is totally different from a person who never had speech, hearing, vision or mobility from his birth. Having not experienced a function is different from losing one that he had all his life. The person with the congenital disability may realize it, but the impact is not sharp or the trauma not severe as a person who had it all along.

The trauma takes the person through multiple phases till he arrives at a stable, accepting condition. I know of a person (let us call him Ram) who became paralyzed after he dived into an empty swimming pool at a party where he had too many drinks. When he woke up in the hospital and realized that his life has changed forever, his emotions were uncontrollable. He regretted his momentary insanity and wrong decision under intoxication. He regretted it badly. But that regret was too late. He was paralyzed from waist down with limited movement of his hands. He was a hard working farmer with large acreage of corn, soya and potato. For Ram, the life of a regular farmer was a thing of the past. Ram became uncontrollably angry with unpredictable behavior towards his wife and daughters. Eventually his wife got tired and walked out. He was all the more angry for what others are doing to him. His elder daughter married and moved out while his younger school-going daughter remained with him. He continued to be angry for several years and then he went into a depression. He was no more the fun-loving dad, husband or friend for people around him. Nobody wanted to go near him. He was isolated. He went into disability pension and barely survived. But the good news is that he eventually came out of his depression. He made himself an electric lift from scrapyard items and stuff bought from the local store. His dad helped him. From his wheelchair, he would use the lift to raise himself to his tractor and he started farming. He took help from others to reap the crops, but he did all the way from preparation of the land, sowing and spraying till the produce became ready to reap. The years of misery was behind him. He was a different man now, with a different view point and different values. He treasured things in life taken casually in his earlier phase. Life was good once more!

This is a typical path of an adult who had acquired disability. The anger, blame and depression are pathways on the road to acceptance and recovery. For some, one or more of these could be long where as for others short. Going through them is more important than the thought of quick exits or stagnation in these stretches of time. I have interviewed dozens of individuals who had acquired disabilities and every single one of them went through bouts of anger, depression and sometimes blaming others for their situation.
I know of a farmer who became paraplegic when he was just a newly married young man. Let us call him Rao. One day he was climbing on to his silo in his farm and a neighbor was holding on the portable ladder he was using to get to the top. For a minute the neighbor was careless and he let go of the hold on the ladder. The ladder slipped and toppled and Rao came crashing down with it. His life changed forever. He was wheel chair bound for the rest of his life. He had a long road of blame and anger. But within a year, his father got him a lift with which he managed to get on his tractor and started his beloved profession as a farmer. That got his mind engaged and he came to accept his life’s situation. Getting engaged in a productive way is a remedy for the negative emotions. Of course, what comes most handy to the road to recovery is the loving, nurturing, understanding, encouraging presence of another caring human being. That is a sure shot. The earlier the recovery, the better chances of restoration into a reasonably good quality of life. Life will be different but it still can be productive, fun and easy going. Mind is the clue to all the recovery. With technology available easily there is hardly any situation that is beyond the reach of recovery. Where medicine and therapy fails, technological marvels can come handy on the road to recovery.