Are cancer survivors ‘disabled’? (Exclusive interview)
Recently, there was news that a cancer survivor was denied the rights of a disabled person, which raised the question – should cancer survivors be at par as the disabled? We asked Dr Pankaj Chaturvedi, renowned cancer surgeon and Dr Abhishek Vaidya, Research Fellow (Tata Memorial Hospital) to get a better picture to understand what exactly a cancer survivor goes through and whether they should get a disability concession. Here are excerpts from the interview:
Do you think cancer-free survivors should be given the rights of a disabled person?
The issue of cancer free survivors being given the right of a disabled person is a contentious issue. Generally, I think several cancer free survivors would have long term disabilities, and should qualify and be given the rights of a disabled person. Specifically, disability in cancer survivors should be defined on a case-to-case basis. Unfortunately, cancer or cancer survivors are not clearly defined in either ‘The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995’, or ‘Right of Persons with Disabilities Bill, 2012’. As a parallel example, the U.S. ‘American with Disabilities Act’ offers protection when cancer is a ‘physical or mental impairment that substantially limits one or more major life activities’, or there is ‘a record of such an impairment’, or ‘being regarded as having such an impairment’.
The treatment and rehabilitation of several cancers is usually a long-drawn process, with long term effects and limitations. Hence there is a need to better define these, so that deserving cancer survivors may be given the rights of a disabled person.
People think that once you have recovered from cancer, a person is fine and can go on with life normally. Is that true? What are the possible after effects of a disease like cancer?
While every attempt is made at physical and mental rehabilitation of cancer patients following treatment, yet in some cases there may be several impediments to patients pursuing their active normal life. The possible effects of cancer treatment may include physical effects such as tiredness, pain or restriction of movement in the treated limb or part, decreased capacity at heavy physical work, changes in speech or voice, etc. There may be social impediments such people need for stoma care (stoma is an opening made in the body to drain out fluids, or as a means to urinate or pass motion), altered eating, scars, changed speech, etc. Further, there may be psychological effects like depression.
However, several other patients are able to resume their pre-illness or pre-treatment activities, and return to active employment. The long term after-effects of cancer and its treatment rely largely upon the site of cancer, how extensive the cancer was, the modality of treatment, and how extensive the treatment was.
What kind of after effects do patients of blood cancer, see? Can they be called as disabilities?
The after-effects of treatment for blood cancers vary widely and, as I said, will depend upon how extensive the ailment and its required treatment were. In general, these patients have a weakened immune system, which may cause increased susceptibility to common ailments and infections, and may restrict their social interactions and performance. The treatment of some kinds of blood cancers in children may affect the physical growth of the child, may cause emotional problems, may affect the heart or the lungs, and may cause learning (cognitive) difficulties. There may also be a risk of hearing disability, thyroid disorders, or infertility.
Unfortunately, under the current definitions, all these cannot be covered under the ‘blanket’ disability definition. They need to be evaluated on a case-to-case basis, and a select few may be covered under the existing definitions of ‘loco-motor disability’ or ‘hearing impairment’.
What kind of rights should they get when it comes to disability?
Cancer patients and survivors need social rehabilitation, and are also required to have regular follow-up and surveillance. Some of the rights and facilities that need to be provided are: train travel concession, travel reservation, allowance for activity suitable work at employment, allowance for leaves at education and workplace. There also is a strong need for prevention of discrimination at workplace, and equal opportunities being offered by the employer. There may also be a need for ‘reasonable accommodation’, which refers to leave for doctor’s appointments or to seek or recuperate from treatment, periodic breaks or a private area to rest or to take medication, adjustments of work schedules, etc.
Cancer is a very traumatizing and difficult disease to fight through, both for the patient and his/her family. A condition that is broadly believed to be fatal, can make a person mentally and physically weak. The innumerable surgeries, rounds of chemo or radiation therapy and then the tiring fight back to normalcy can be exhausting for the best of us. Giving people who have come through such a terrible fight some amount of leeway is only fair. Although deciding on a case to case basis is the most responsible way to handle the situation, who is to say that this is not another racket or means to bribery waiting to happen?