Disabled student has to be carried up the stairs every day as this Himachal medical college has no ramps

Rohit Prasad had always dreamed of studying medicine, an ambition his parents encourage him to pursue regardless of the fact that he has muscular dystrophy and uses a wheelchair.

That goal saw him achieve good results in school as well as the medical entrance exams. But for Rohit, clearing the medical entrance exam was a small hurdle, compared to what he goes through every day at the Government Medical College (GMC) in Nahan, Himachal Pradesh.

The college is inaccessible, and Rohit has to be lifted along with his wheelchair on the steps. His mother says she has to appeal to the visitors at the hospital to help her lift her son.

A humiliating experience that he is being subject to as the college has chosen to flout Medical Council of India guidelines, the RPWD Act, 2016 and those of the Himachal Pradesh government.

My son sometimes cries and says he does not want to study like this. It bothers me, but I am determined that he not give up on his dreams. He has been a bright student all throughout. – Kiran Prasad

For Rohit, this apathy is not a one-off experience. He first got admission into the Government Medical College, Chandigarh, but when college authorities found out that he was disabled, they turned him down. “They asked me ‘how can your son study medicine when he is like this”, says Mrs. Prasad.

Rohit did not give up and was granted admission at GMC Nahan. Here too, he got similar reactions. But Rohit’s family is determined not to back down in the face of such callousness.

They have approached well-known disability rights activist Dr Satendra Singh for help. As Rohit’s mother puts it, “this is not a fight for my son alone but for all disabled students who want to study medicine”.

Dr Singh, who has been at the forefront of fighting for the rights of disabled students to study medicine, has taken the matter up with senior authorities in the Himachal Pradesh government as well as the MCI. He had petitioned the MCI in 2014 asking for all medical colleges be made accessible.

Dr. Singh says that despite the provisions of the RPWD Act 2016, a majority of leading medical colleges are not making any serious efforts to ensure their campuses are accessible.

“I wrote to the All India Institute of Medical Sciences (AIIMS) in New Delhi and the Post Graduate Institute of Medical Sciences (PGIMS) in Chandigarh about making their buildings accessible.. AIIMS responded saying this was a 'daunting task'!”.

The problem, he believes, lies in the fact that rules under the RPWD Act 2016 have not been framed in many states.

“Besides, accessibility in India not been understood. The onus has been put on individuals and that is not going to work. It has to come on the government. We also have to ensure we have trained access auditors, which is a serious lack.”

In the bargain, sincere, committed students like Rohit are being subject to daily humiliations, a violation of basic rights granted under the Constitution.

Source: Newzhook dated 23 Sept 2018

Student With Disability Carried up Stairs in Himachal Medical College Without Ramps

New Delhi: For the last two months or so, Chandigarh resident Rohit Kumar has been struggling to attend MBBS classes at the medical college in Nahan, Himachal Pradesh. He was admitted to the college earlier this year after securing the 181st rank under the ‘physical handicap’ quota in the all-India medical entrance examination, but the campus isn’t wheelchair-friendly. In the absence of a ramp, volunteers have to lift him up and down the staircases of the multi-level college building.

Though Kumar’s father, B.N. Prasad, had raised the issue with the state health minister Vipin Parmar when he recently visited his residence in Sirmaur district, where the college is also located, the only assurance he received was that the college would make necessary changes to the stairs.

Rights activist lodges complaint with MCI, concerned officials
Disability rights activists, who have been fighting for the need to make all such medical institutions friendly to persons with disabilities, see the Nahan medical college as a clear cut violation of the Medical Council of India’s (MCI’s) guidelines to make all the medical colleges disability-friendly.

In view of Kumar’s situation, associate professor of physiology and co-founder of the Medial Humanities Group at University College of Medical Sciences, Delhi, Satendra Singh, has complained to the president of MCI, additional chief secretary (social justice and empowerment) of Himachal Pradesh and director and deputy director of empowerment of SC’s, OBC’s, minorities affairs and the specially-abled (ESOMSA) of the state government about how the medical student’s case also highlighted violations of the Rights of Persons with Disabilities Act 2016.

Singh recalled in the complaint that it was on his petition in the court of chief commissioner for persons with disabilities and later with the National Human Rights Commission that the MCI had directed all medical institutions in the country to become disabled-friendly and also instructed them to submit a compliance report.

He said following the petitions, the MCI had revised the standard assessment form and thereby fixed the accountability of accessibility of the medical institution on to the dean or principal.

Furthermore, he said, the Centre had enacted the Rights of Persons with Disabilities (RPwD) Act 2016 to give effect to the United Nations Convention on the Rights of Persons with Disabilities, which lays certain principles for empowerment of persons with disabilities. These principles call for “respect for inherent dignity, independence of persons; non-discrimination; full and effective participation and inclusion in society; respect for difference and acceptance of persons with disabilities as part of human diversity and humanity; equality of opportunity; accessibility; and equality.”

Singh said it was also notable that the director of ESOMSA in Himachal Pradesh had on May 5, 2017 issued directions for the implementation of provisions of the RPwD Act in letter and spirit. Also, he said, the governor had on July 20 this year appointed a deputy director (welfare) of ESOMSA as the grievance redressal officer.

`Nahan medical college did not comply with directions’

But despite all of these legislations and mandatory orders being in place, Singh lamented that the Dr. Yashwant Singh Parmar Government Medical College, Nahan, remains disability-unfriendly and has failed to provide necessary accessibility to persons with disabilities.

Stating that the fact that Kumar had to be physically lifted in the medical college every time he goes there to attend his MBBS classes amounts to “humiliation”, he charged that the lack of accessibility at the college showed that the administration had flouted the MCI norms as well as provisions of RPwD Act and the state government’s directives.

“The Principal of Government Medical College, Nahan also happens to be Director, Medical Education & Research of Government of Himachal Pradesh. In both these capacities she has flouted the law and government order. As per the MCI Standard Assessment Form, it is the responsibility of the Principal to comply with the Disability Act,” said the disability rights activist.

MCI urged to pull up principal for dereliction

Singh also urged the MCI president to take strict view of this violation and seek explanation from the principal and direct her to make the campus accessible by providing at the earliest all reasonable provisions as laid down under the RPwD Act.

He also appealed to the state government, ESOMSA and the grievance redressal officer to consider his complaint under Section 20 of the RPwD Act for investigation and take up the matter with the establishment for corrective action within two weeks as prescribed in the Act.

Singh also sought strict action under Section 89 and 92 of the Act and the imposition of a financial penalty and imprisonment, as deemed fit and provided in the Act, since this was a case where a person with disability was being forced to undergo humiliation because of lack of accessibility, which is his right.

Kumar’s father concerned about son’s well-being

Meanwhile, Kumar’s father has also been raising the issue of the difficulties faced by both his son and the volunteers and attendants when they have to physically lift him from one floor to the other in the college. Prasad said he has written letters to the prime minister, chief minister and also the college management to seek their intervention for urgently making necessary provisions for ensuring the smooth movement of his son around the medical college.

He has also pointed out that even after Kumar got admission in the college, necessary arrangements for making it accessible have not been provided. Kumar is also not able to avail of the hostel because of similar shortcomings.

He has pointed out that at least four people are required to lift Kumar each time and this is as perilous for them as the medical student. Kumar uses a wheelchair to move around as his muscles have been becoming weak due to muscular dystrophy.

Source: The Wire dated 23 Sept 2018

A Patient’s Journey. Duchenne muscular dystrophy (BMJ)

On occasion of Muscular Dystrophy Day, I am sharing an article published in British Medical Journal.

                                  Photo Credit: Hans-Peter Maser (M.Sc.), Basel, Switzerland

A Patient’s Journey. Duchenne muscular dystrophy.

Spies S, Schipper K, Nollet F, Abma TA.           

BMJ 2010;341:c4364  (Published 7 September 2010)

I was diagnosed with Duchenne muscular dystrophy at the age of 3. My parents were always honest about my disease, but I didn’t really care much about it. As the progression was slow, I gradually began to understand its impact, including the physical restrictions. I’m now severely disabled and have lived much longer than the doctors expected. The loss of opportunities open to me, combined with the fact that I’m still alive, evokes many mixed feelings.

Moving to a residential home

I moved into a residential home when I was about 20 years old. This wasn’t easy. I had to get used to being helped by a succession of professionals. Until then, my mother had been my only carer. The move was also difficult for my mum. She had to trust new, unknown, professional caregivers. It was hard for me, too, since I love my mum and I want her to be happy.

Constant adjustments

I have to adjust repeatedly to changing reality. I used to play wheelchair hockey, but I’m not able to do that any more. I cannot go out without help. My ideas and preferences have also changed. Initially, for example, I resisted when the doctors said I needed artificial respiration during the night. I accepted this for night time, but didn’t want a cannula 24 hours a day. With a cannula I would be totally dependent on others. But when eventually I actually needed respiration 24 hours a day, I agreed. It scared me and at that moment I wished I was dead. It was an enormous step, but my feelings changed over the time. Still, it is hard, every time a new problem occurs.

I need some time to get adjusted to the changes, and medical specialists sometimes go too fast. The operation of the cannula was planned three weeks after the decision, which gave me some time to adjust—but then I was asked to undergo it earlier. Medically that was probably a good decision, but for me it was too sudden. I was upset and thought about cancelling the operation. Afterwards I was happy with the change, but not knowing what’s going to happen is scary.

Fear and dependency

For me, the fear and dependency is the worst. I am totally dependent on others and can’t do anything at all. Were something to go wrong with the cannula, I would be able to survive for only three minutes without artificial respiration, then I would die.

An automatic alarm is set to go off in case of an emergency, or I can use the alarm system myself. It frightens me—does it work? Will the caregivers be in time? Sometimes, the plug for the alarm bell comes out for a little during the night. I can’t use it if this happens, since I’m not able to put it back, so I have to scream. I’m afraid there may come a time when they don’t hear me.

Artificial respiration restricts me. I can’t go out alone, I need somebody to help me in an emergency and to drain off the mucus in my trachea.

Some people with artificial respiration go outside without other people. They ask a passer-by in case of an emergency or if they need help. I don’t do that since I don’t want to be troublesome and I don’t want to take risks. I want somebody to go with me who knows how to respond properly if necessary.

I do not want to be troublesome in my home. I try to remember the answers to my questions and ask for help if I have more questions. Sometimes I lie uncomfortable in bed for hours, because I don’t want to call for help. This is not satisfactory either.

Religion

My religion really helps me. I’m not angry because of my disease but I’m disappointed if things go wrong. I realise that the Lord will support me always. Maybe not immediately, but later on. I realise that He was with me in these difficult moments.

Of course, I wish I could recover, but that does not appear to be a possibility. People in church pray for me and for my recovery. I think it’s really sweet, but for me my disease also has a meaning. It’s not senseless, since I’m now able to show people how privileged they are. My body tells them that being healthy isn’t something to be taken for granted.

I think we should realise that we are all vulnerable. People have to know that they could be disabled the next day without warning. My disease can motivate people to create a good life, to make them realise that life isn’t always easy.

Together but lonely

I have many friends, and they and my family are important to me. Other people sometimes have problems with handling my disability. Because of this, they avoid talking with me and find it difficult to gauge my mood and situation.

Often I don’t want to talk about my disease or express my feelings. I keep my fears, doubts, and questions to myself as I don’t want to make people feel sad. I want it to be cosy. Sometimes this sense of responsibility is tiresome. Then I can’t let it go, which leads to lying awake, thinking about it, at night, and makes me feel sad and angry.

Relations and sexuality

I would like to have a wife, but then I also would long for children, and having children is impossible. I wouldn’t be able to handle situations like being unable to hold my child or for us to play together.

I think my wife shouldn’t have to be responsible for the children and me, and to know that she would end her life alone, without me. That makes me sad. And because of this, I don’t want to marry. But I do have some sexual needs and I don’t know what my religion allows. If I watch a movie, I feel guilty and sad afterwards. My religion supports me, but during these moments it’s difficult. Also, it’s hard seeing friends and family getting married and having children, and realising that I will die without such things.

Empty days and dreams for the future

My days are long and I’m at home most of the time. It’s boring. I watch some DVDs and I surf the internet. I read in the Bible and think about my life and what’s going on in the world. I would like to go to a day activity centre again. This is only possible with a wheelchair taxi and in company with a skilled person. Unfortunately that’s expensive. We’ve had some activities in the living room of our home, which was great. At the moment, the ground floor is being rebuilt to create a real day activity centre. I’m looking forward to visiting it and meeting other people.

The end of my life

I try to enjoy life as much as possible, but for the last few years I have been thinking more and more about the fact that I’ll die early. It makes me sad. I have already lived longer than everybody expected when I was born.

I’m scared about the future and about dying, so I try to focus on the nice things in the future. And even if it’s hard, you have to go on. Sometimes I wish it could be all over, but at such times I can always find a bright spot again.

Helping hands along the way

·         People who support me by asking how they can help me and by asking if I need or want help. Sometimes people have good intentions, but are clumsy in their actions

·         The support of my parents, family, and friends, and of my religion

·         My willpower and persistence and my ability to see the bright side of things again and again

·         Taking responsibility for my own behaviour and my relations with others. We have to care for each other

·         My wish to motivate other people and my drive to teach them something about life. This is the power of giving. By doing this, I can make sense of my illness

A doctor’s perspective

Duchenne muscular dystrophy is a progressive muscle disease affecting boys. The muscles degenerate as a result of defective dystrophin caused by mutations on the X chromosome. The typical course of the disease is delayed motor development that increases. Diagnosis is usually made at around preschool age. As muscle weakness progresses, walking becomes more difficult. Around the age of 12, the boys become wheelchair dependent. Later on, arm and hand functions decrease, and problems with swallowing and speech arise. Respiratory insufficiency in the late teens causes death unless mechanical ventilation is applied. Mechanical ventilation has become a routine part of treatment over recent decades.

Boys with Duchenne muscular dystrophy are confronted with many medical issues as they grow up, such as possible cardiac involvement, the need for scoliosis surgery, side effects of corticosteroids like osteoporosis, and growth retardation. They become increasingly dependent on orthoses and wheelchairs, and on personal help. In childhood the parents are the most important caregivers.

Stefan, a 27 year old man with the disease, has many worries and fears—about his end of life, about the possibility that his ventilator may become defective, and many other issues. He finds it difficult to adjust to changes. Not wanting to be a burden is a common attitude among young people who have always been dependent on others. This hinders the sharing of concerns with caregivers and intimates. They already have to help so much, so Stefan thinks he should not bother them with his troubles. Knowing that feelings are not easily voiced, explicit attention should be given so that people like Stefan have a trusted person they can talk with, preferably someone they are not dependent on.

With prolonged life expectancy, children with Duchenne muscular dystrophy nowadays make the transition into adulthood and often move to specific housing where help is given by professional caregivers. Stefan makes clear that this is not an easy change. Although help is provided, professional caregivers have different routines and opinions, and are not as trusted as the mother. This complaint of differences in behaviour between caregivers is common. Caregivers should act more consistently to accord with the individual’s needs. This should be taught, learnt, and discussed openly with the patient.

Stefan has said that he has a lot of pain; whether this is dealt with adequately is not clear. The problem of pain in Duchenne muscular dystrophy is underestimated by health professionals, and it is conceivable that Stefan will not raise the issue easily.

The risk of treating children and young adults with Duchenne muscular dystrophy is that, with so many medical and rehabilitation issues to deal with in an ongoing chain of events, the person involved may easily be overlooked. Measures are applied by many health professionals, all intended to help (see box). Deciding what needs to be done should be based on guidelines. As the child changes into a young adult with his own opinions, needs, and concerns, health professionals need to change their attitude accordingly, from deciding for the child to listening to the patient and responding to his needs.

What can medical professionals do?

·         Give patients and their relatives enough time to adjust and to get used to the idea of impending changes

·         Give emotional and mental support. Doctors are often too busy with the medical aspects of the disease; they should pay more attention to the whole patient and his emotional wellbeing. Patients need somebody who really listens to them. Living with Duchenne means continuous adaptation and continuous regression—because of this, continuous emotional support is needed

·         Professionals try to find solutions for problems. The solution to a practical problem, like a new alarm system, is not the same as the solution for the underlying emotional difficulties. These emotions cannot be solved with technical or practical solutions, but they also need attention

·         Living with Duchenne evokes many existential questions. Those questions can’t be solved alone or with the help of daily caregivers. Psychosocial support is needed to deal with clients’ questions and emotions

·         Practical support should be attuned to individual needs and wishes

·         The whole family should have support, since Duchenne is difficult for all family members

·         Some patients and family members wrestle with feelings of responsibility. Professionals should be aware of this and should support patients and family members who express responsibilities felt for others