Discussion with a parent @ Malawi

An interview with Mr. Geoffrey Kamanga of Zomba, Malawi tells it all. Msenga: Welcome Mr. Kamanga! G. K: Thank you, Mr. Mulungu! Msenga: You previously told me that you have a child with disabilities. What is your child’s name and what’s the age? G. K: Yes, very true! He is Geoffrey Kamanga Junior, 11 years old. Msenga: What are some of the daily support that you provide for him on daily basis, that he cannot do on his own? G. K: They are in two forms; in terms of mobility and in terms of holding things. So, there are certain things which he can do on his own and other things that we help him do. But also, in terms of mobility; he crawls when he is a lone or playing. But we carry him when he needs to use the toilet, we lift him on to the bed and off the bed. Msenga: Are there any activities he can do without other people’s support? G. K: Yes, many of them. Msenga: Like what? G.K: He is able to speak…. As I earlier said, I have taught him to handle a spoon or a folk. So, he is able to eat porridge on his own. The challenge is that he cannot cut and make nsima balls. We cut nsima into small pieces so, he can just pick and eat. He also used to urinate into a bottle previously, now he feels old enough to do so. Hence, he crawls to the toilet to pass urine. Msenga: As a father, how do you feel having a child with disability? G. K: It’s difficult to answer, hmm! He is my child like my other children. I have 4 children, all are boys. Msenga: What is his sibling number? G. K: One! He is our first born. So, I feel nothing! Msenga: I have asked you such a question because many fathers do not want to be associated with their children with disabilities. They do not take part in helping to nurture … What can you say? G. K: That is brutality! As I have said, a child with disability is like any other child. A parent should love a child with disability just the same way as those without disabilities because the one with disability, did not choose. It’s we parents that brought him to life. So, as a father I have to take care of him. Let me tell you; may be you have forgotten, Mr. Mulungu, you gave me some literature on Cerebral Palsy. Sometimes I read from the internet. I sometimes gather my children and my wife, teach them how we can support and care for this child with disability. Msenga: What are the attitudes of your neighbours towards your child with disabilities? G. K: It will be difficult to answer because I hear nothing. It starts with us how we treat our child with disabilities. We take him as the first born of our family and we complain nothing about him. For the neighbours to start saying ill about our child, will depend on what we say ourselves. I have heard nothing. Msenga: What about his younger brothers, how do they support him? G. K: Mr. Mulungu, if there is something that I am proud of; it is the love that Geoffrey Junior received from his younger brothers. His brothers are always helping him. So we have the support system in the family such that last week, Zanti, who is one year old, took a bottle to Geoffrey Junior after seeing him wanting to urinate. This encouraged me. But also you know these are children, sometimes they forget that their brother has disabilities and cannot do certain things on his own. So, I sit down with them to remind them why their brother cannot do certain things. Msenga: My last question is on Covid-19. How has Covid-19 affected the livelihood of your child with disabilities? G. K: You know the schools that our children go to; there are more Covid-19 threats. For example, there are preventive measures which I feel my child is not safe. For example, our child with Cerebral Palsy cannot use his hands to put on or remove the face mask, will need someone to help but at a space of one metre. This is not possible. Again, how can someone push him on a wheelchair with one or two metres space of the pusher. My son is at more risk when crawling as he exposes a large part of his leg to the ground unlike those using feet when walking. Hence, we are afraid of sending him to school since reopening. We feel his life is at risk with this pandemic. Msenga: Thank you for accepting to chat with me.

Training and knowledge Material needs to be developed in local languages – A request from Malawi, Africa.

Such reading materials can be important for local communities to understand issues on disabilities if DPOs used them in local langues. Literature can effectively transform the way we think and the way we hold attitudes towards persons with disabilities if only we understand and contextualize what we learn from the wider world. Hence, the need to communicate in local langues.

Here’s the link to the file: https://s.docworkspace.com/d/AA7AxCvgo95B8IrRxqWdFA Shared from WPS Office: https://kso.page.link/wps

https://s.docworkspace.com/d/ANU-YHbgo95BgKWsyaWdFA Shared from WPS Office: https://kso.page.link/wps

Interview with Pamela, a single mother of a child with disability from Lilongwe, Malawi, Africa.

Pamela, (Mother) with 4 year old Irenaeus Chisiza

Msenga: Madam can you introduce yourself?

Pamela: I am Pamela Chipeka and am 29 years old. I am staying in Area 25, Lilongwe.

Msenga: What can you tell me about your child?

Pamela: My child is Irenaeus Chisiza, male and 4 years of age. He was born with Cerebral Palsy (microcephalus) and is also epileptic.

Msenga: When did you realize that Irenaeus had disabilities?

Pamela: I knew about his condition before he was born. I was scammed when I was expectant, and was told that the baby had some challenges. As a result, I got prepared psychologically for the difficulties I was to experience in nurturing the child after birth.

Msenga: Where is the father of your son?

Pamela: Unfortunately, I cannot trace his where about. We parted before Irenaeus was born. However, there is no connection between our separation and his disabilities.

Msenga: How do you feel for being a mother of a child with disabilities who at 4, cannot sit, stand or talk?

Pamela: I have a positive feeling because I was psychologically prepared with that early identification.

Msenga: What are the attitudes of your relatives towards your child? Pamela: All my relatives have accepted my child’s conditions and they are morally supportive.

Msenga: What about your neighbours? What are their attitudes towards your son? Pamela: It is a mixed bag. For sure, some neighbours have negative attitudes. They like discouraging maids that I hire to abandon my child with disabilities. They advise them wrongly. Hence, I keep changing maids. Some landlords do not accept me to occupy their houses as a tenant just because I have a child with disabilities.

Msenga: Now as a parent, what are your challenges for having such a child with disabilities? Pamela: There are many but will mention just a few. For instance, as a young woman, some men who want to propose love, shy away when they realize I have a child with disabilities. Further, I fail to carry out personal distance business errands because I have to be there for my child all the time.

Msenga: What do you hope to see of your child?

Pamela: I still hope to see my boy to sit and stand or even walk a lone. Already, I can see some improvements as he can now respond when I call his name. I would love to see him play with other children in the neighborhood.

Msenga:What advice can you give to other parents of children with similar situation as yours?

Pamela: They should accept the challenges facing their children with disabilities, support them with affection.

Msenga: My last question is on Covid-19. How has the pandemic affected you? Pamela: I lost my good paying job because the employers could not make good business. Again, Covid-19 deterred progress in rehabilitation as centres for physiotherapy closed.

Msenga: Thank you for your time.

IMPAIRMENT OR SYSTEMATIC DISABLEMENT

My ROAD LESS TRAVELLED

[I am paralysed below the neck and writing this with the help of a speech activated software. Every day there are new challenges, but my life is rich and meaningful. We can all achieve great heights just by keeping on showing up. It’s not about all the things we cannot do, but what we choose to do with what we can do.” In the words of Confucius, “Our greatest glory is not in never falling, but in rising each time we fall.”]

This is my journey with a particular examination and selection process, the obstacles, challenges and the final turning point. I hope this story inspires more persons with disabilities, who feel let down by situation, or get pulled down by obstacles.

Preethi Srinivasan

For PhD, I applied to IIT (Madras), quite sure that I wouldn’t be able to satisfy all the criteria for admission into India’s premier educational institution. Upon receiving a summons from them to appear for the entrance examination, we travelled the previous night to Chennai and were provided accommodation in one of their hostels.

With the help of two PhD students who were assigned to take care of me, one of whom agreed to be my scribe, I wrote the examination to the best of my ability. As luck would have it, I was chosen for an interview in the afternoon and was absolutely thrilled to receive admission into the PhD program. I was assigned two guides, who were both very kind and considerate. It took a while, but it slowly sunk in that I might actually be the first woman with a 90% disability to ever receive admission into any of the IITs in their illustrious history. I felt blessed beyond belief.

In order to receive an admission as a full-time PhD scholar however, I had to submit my resignation from work. I was verbally assured that I would be getting a stipend while I was studying. So, I happily handed over my papers and became engaged in the first year of academic activities. More than a month later, I was shocked to be informed that I would in fact not receive any stipend from IIT. My guides were equally bewildered at my plight. They were also unaware of a small but critical snag in the system. As a person with disability, I was permitted admission into IIT without passing the UGC NET examination. However, to avail the fellowship accorded to a PhD scholar, apparently the NET exam needs to be compulsorily cleared.

I found this to be absolutely inexplicable. If a person with disability could get admission but not financial support, how was she or he supposed to sustain herself/himself over the years of research? I felt that the most vulnerable and in fact deserving candidates were being cut off at the knees and left stranded. I say this because we fight so many obstacles and difficulties just to get admission. Wouldn’t it be fair to treat us like any other PhD scholars once we gain admission? We should either be treated equally upon admission or this so-called leniency of allowing admission for persons with disability without the NET examination, only to be denied financial support later, must be removed altogether, in my view.

I felt totally helpless and stranded. Having been away from academics for several years, I had no confidence that I could pass such a competitive and difficult exam. I was anxious and cornered, but my guides encouraged me to go ahead and face this challenge head-on as well. Finally, with very little idea as to what I was doing, not to mention complete insecurity and lack of confidence, I applied to write UGC-NET examination. I found that in order to apply for JRF [Junior Research Fellowship] the age limit was 28 years. I was flummoxed. If one wants to do research, what does age have to do with it? Why should a person be robbed of financial stability during the period of research based on their age? Working with what I had, I applied for the Assistant Professor category which did not have any age limit.

Soon I was into the last leg of preparation. With just over a week left before the examination, I decided to call the centre to which I was assigned to find out about wheelchair accessibility. It is noteworthy that during the application stage itself we are asked about disability and made to present our disability certificate. And yet, to my utter dismay, it turned out that the examination centre was not accessible at all. In fact, I was told that it would be conducted on the first floor which would require the student to climb forty steep steps.

There was no way I could even dream of reaching the first floor in my motorised wheelchair. And, just the thought of the indignity and humiliation I would face if I had to be carried up the stairs was unbearable. So, wasting valuable time I had to make myriad phone calls to government officials and members of the media to highlight this scenario of discrimination and complete apathy to my needs. After making a big hue and cry, they agreed to give me a small room which required me to be carried only a few steps. This small room was more like a storage room without any light or ventilation where they had installed a camera and other devices to ensure that I wouldn’t cheat. If similar protocol had been diligently followed to ensure that I could write the exam with dignity, I would have appreciated it.

Last but certainly not least, came the challenge of finding a suitable scribe to write the examination. I needed somebody who had some knowledge of how to approach an online examination. I requested many, but was unable to find anyone. Then just about 48 hours before the examination, I got a phone call from one of my IIT associates, who had identified someone in Thiruvannamalai. Nobody wanted to travel and as it turned out, my scribe was a capable young woman, but the stress and anxiety I had to go through till the last moment was incredibly difficult. I faced so many moments where I wanted to breakdown and cry because it wasn’t anything I had envisioned. I wanted to give up and accept defeat.

However, giving up has never been an option in my life and as I sat in front of the computer to have my face photographed for identification, I was already tired after the incredible battle I had to fight just to be there. The room was stuffy; it was so hot that I had to request for a wet cloth to be draped over me.  A couple of temporary fans and half a bucket of water (so that I could soak the towel once more after it became dry) were generously arranged for my benefit and soon it was time. Thankfully, part of the leniency for a “person with disability” during this examination is extra time (for the three-hour examination we are given an hour’s extension), but it does not seem to enter the thought process of decision-makers that it would be difficult for a wheelchair user to sit continuously for four hours without any break.

The examination was so difficult; by the time I came out I was on the verge of tears. I reached home and genuinely apologised to my mother saying that I was just not good enough to remember all these names and dates. I assured my mother and also my guides that there was no way I was going to pass this examination. Yet, nobody seemed too troubled by my laments because they had faith in me, although I hadn’t the vaguest idea why. I was so sure that I would fail. I told them that I got so tired as time went on I just could not concentrate or recall anything.

I could not sleep for the first few nights after the examination. I had never failed so miserably at anything in my life. Then, on the day the results were announced, I had no courage to look at my marks. My friend saw it and congratulated me. I could not believe it. I asked her over and over again but she just laughed and told me to look for myself.

It turned out that I had cleared the exam with flying colours! I was deemed ineligible to apply for JRF due to the age restriction, but in truth, based on the cut-off, my marks were good enough to pass in both categories. Ironically however, even after cracking JRF I couldn’t behold the title of JRF because I crossed the cut off end as far as the age limit those. It’s tragic that age becomes the criteria for research and merit.

After seeing my mark sheet, what I felt was not pride or triumph but deep gratitude and relief. I had been beating myself up for failing the entire segment of society I represent. If I had failed, it would have been so easy for the system to say, “They’re just not good enough. How much ever we try to help them, they fall short.” I did not want to give anybody that satisfaction. I wanted people to look at me and rethink their judgement about “persons with disability” and for those in corridors of power to take us seriously. I desperately wanted to represent my community and show the people in the ivory towers that we may have physical impairments, but we have the same right to a good education as anybody else.

However, after all this, my struggles were not over. I had passed the exam, but UGC refused to hand over my certificate and IIT could not approve my stipend without receipt of the certificate.

Finally, my certificate was released and just today, my first Fellowship stipend has been received. After nearly one and ½ years of struggle, I have finally become a PhD Research Scholar, equal to the rest of my peers in every way. And, although it has been a long and arduous journey, the persistence and perseverance has paid off.

I hope this story will motivate and inspire more people to face seemingly insurmountable challenges in life. I am paralysed below the neck and writing this with the help of a speech activated software. Every day there are new challenges, but my life is rich and meaningful. We can all achieve great heights just by keeping on showing up. Like I say, “It’s not about all the things we cannot do, but what we choose to do with what we can do.” In the words of Confucius, “Our greatest glory is not in never falling, but in rising each time we fall.”

I sincerely pray that my story will create a precedent and permit many more women and men with disability to gain admission into prestigious educational institutions like IIT. Finally, I humbly request the people in power to delve slightly deeper than the surface and offer truly inclusive policies so that those with disabilities are not dealt in such a callously apathetic and unjust manner in the future.

 And, finally, I wish to offer hope in these difficult times. Life along the road less travelled may be incredibly bumpy, but if we persevere, we will find that ends in victory.

Preethi Srinivasan

Thiruvannamalai

 18 April 2020

Parents travel over 200 Km to access services for their Children with Mobility Challenges.

Parents from the district of Karonga have lamented that for their children with mobility challenges to access services, they have to cover over 200 Kms. One of the parents, Mr. Richard Mzinza, who is father to a seven year boy, Pilirani, with cerebral palsy, explained that he had to sell all the rice that he had harvested in order to find transport money to travel with Pilirani to the nearest service provider in Rumphi district. On the other hand, Kettie Mwawembe had to sell all the chickens that the family had in order for their 19 year old Blessing to access a wheelchair at Malawi Against Physical Disability in Rumphi. She further explained that her son’s disability was impoverishing the family. The two parents also narrated that their wards would still find it difficult to use the wheelchairs in their homes due to the geographical terrains. The areas are very Sandy and in some places, very uneven. Special schools and specialist teachers were also not available in their home schools. Generally, they said that nutrition for children with disabilities as they are very selective to special meals like foods from soya bean and milk. Hence, parents fail to source them. On the distance to the service provider, they were appealing for mobile clinics to cut off transport costs. The physiotherapists should help such children in their homes.

Statewide Siege Protest Demanding Removal of Illegal restrictions to accessing disability pension. December 3 Movement Tamilnadu, India. சட்ட விரோத தடைகளை நீக்ககோரி மாநிலம் தழுவிய முற்றுகை போராட்டம் – டிசம்பர் 3 இயக்கம், இடம். சென்னை, தமிழ்நாடு, இந்தியா.

  1. According to Government Social Welfare Department G.O vide. 41, Persons with disabilities with 40% impairment who have an annual income of Rs. 3,00,000 / – or less: and according to the The Disability Act 2016 disabled under 21 types of disability must be provided disability pension. சமூக நலத்துறை அரசானை எண் 41-ன் படி 40 சதவீதம் ஊனமுடைய, மற்றும் ஆண்டு வருமானம் ரூ. 3,00,000/- -த்திற்கு கீழ் உள்ள 2016 ஊனமுற்றோர் சட்டப்படி 21 வகையான அனைத்து மாற்றுத்திறனாளிகளுக்கும் உதவித்தொகை வழங்க வேண்டும்.
  2. Illegal regulations, which are against the spirit of RPD Act 2016 i.e. age limit, poverty line, Adhaar Card, Ration card, VAO investigation, e.t.c. must be removed.வயது வரம்பு, வறுமைக்கோடு, ஆதார் கார்டு, ரேசன் கார்டு, VAO விசாரணை உள்ளீட்ட சட்ட விரோத விதிமுறைகளை நீக்க வேண்டும்,
  3. Disability pension allowance, provided by the Government should be increased to Rs. 3,000 as provided in other states like Pondicherry and Telangana. மாற்றுத்திறனாளிகள் துறை மூலமாக உதவித்தொகை வழங்கபடுவதையும், தெலுங்கானா, புதுச்சேரி போன்ற மாநிலங்களை போல் உதவித்தொகை ரூ. 3,000/- -மாக உயர்த்தி வழங்க வேண்டும்.
  4. Persons with disabilities with above 75% of impairments must be given the allowance amount Rs. 1500 which is provided for the severely disabled people. 75 சதவீதத்திற்க்கு மேல் உள்ள கண்பார்வையற்ற, காதுகேளாத, வாய்பேச முடியாத மாற்றுத்திறனாளிகள் அனைவருக்கும் கடும் ஊனமுற்றோருக்கு வழங்கும் ரூ. 1,500/- உதவித்தொகை வழங்கிட வேண்டும்.
  5. Persons with disabilities should be facilitated to apply directly via online. இணையத்தளத்தில் மாற்றுத்திறனாளிகள் நேரடியாக விண்ணப்பிக்க வசதி ஏற்படுத்தித்தர வேண்டும்.
  6. Accessible ramps and other adaptations should be set up at all e-service centers. ஈ – சேவை மையங்கள் அனைத்திலும் கைப்பிடியுடன் கூடிய சாய்வுதளம் அமைத்துதர வேண்டும். உதவித்தொகைக்கு விண்ணப்பிக்க அரசு நிர்ணயித்த தொகையான ரூ.10/- ரூபாய்க்கு மேல் வசூலிக்கும் ஈ- சேவை மையங்கள் மீது கடும் கடும் நடவடிக்கை எடுக்க வேண்டும். Take drastic action against E service centers which collects more than Rs 10, the amount fixed by the government to apply for the pension allowance application.

PODCAM counsels a family for locking up a member with disabilities for 30 years.

The news about Estery Chakhumbira, 30 years old lady with severe cerebral palsy was all over in the social media.

Estery lives in Lumbadzi, Traditional Authority Mkukula in Dowa District of Malawi. She lives with her mother who has been a widow since 1991 when her daughter, Estery was a year old. The mother who is about 69 years old, explained that Estery was born prematurely at 6 months, with weak nervous system. She cannot stand not sit. She has to always lie on her back or stomach. Her both legs are very weak from her knees and both hands can hardly hold anything. Hence, Estery relies on someone nearly her for everything. Worse still, she can hardly utter a meaningful word though she can hear. Her mother stopped going with her for physiotherapy at six due to increased weight to be carried on the back, as she became so poor that she could not afford transport fares to the rehabilitation centre some 25 Kms at the Central Hospital. At one point, they got a wheelchair but I found out that they rarely used it till it got lusty and worn out. I advised the mother and Estery’s elder brother that once the wheelchair was fixed, they should make sure Estery uses it outside the house for her change of environment, she should have chance to chat with other people for her socialization and Vitamin D from the sun. I advised the mother that locking up her daughter in the house was a sign that she was feeling ashamed of her daughter’s disabilities. She should learn to accept the condition of her daughter so that the community can also accept her. I promised to followup with them once the wheelchair is brought back. Other individuals and organizations have been following up with the story by visiting the family with different material and moral support. One such an organization is the Female Sex Workers Association whose Executive Director, Zinenani Majawa, carried a variety of items to support the family.

December 3 Movement Karur District, 40 persons with visual impairment were given mobility training and white canes. Location: Karur District, Tamil Nadu, India.

Zoom meeting with Board members-December 3 Movement

டிசம்பர் 3 இயக்கத்தின் மாநில மற்றும் மாவட்ட முக்கிய நிர்வாகிகள் கூட்டம் டிசம்பர் 3 இயக்கத்தின் மாநில தலைவர் பேராசிரியர் திரு. T.M.N. தீபக் அவர்களின் தலைமையில் ஆன்லைன் Zoom meeting வழியாக நடைப்பெற்றது. இதில் சில முக்கிய முடிவுகள் கலந்துரையாடப்பட்டது…

டிசம்பர் 3 இயக்கம்

State and District Executives Meeting done today. December 3 Movement State President Prof. Mr. T.M.N. Deepak led them through an online zoom meeting. Some important conclusions were discussed

December 3 movement

Families of Children with Disabilities are severely hit economically due to Covid: steps taken in Malawi to train parents on making masks.

Speaking with one parent of a youth with disability, Ronnacy Nyirongo of Mzuzu City PODCAM support group, sounded SOS.

Ronnacy says that in the course of the Covid-19 pandemic, families with children with disabilities are severely hit economically. Such that they cannot afford to buy the lucrative face masks for themselves and their wards. In fact she said that even the acquired masks do not last long as the usage is not well understood and cared for by the children with disabilities especially those with Intellectual Disabilities. Hence, she has engaged the parents with trainings in making masks locally that could be reused. She further says that this challenge is also rampant when it comes to teaching parents on how to sew sanitary pads for adolescent girls. Most mothers come from ultra- poor families which can hardly source the materials for this productive local industry. Hence, the appeal for well-wishers. Let us help these destitute mothers.