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.

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.

December 3 Movement Siege Protest Success! In Nilakottai. Dindigul District, Tamil Nadu. India

The Dindigul District Nilakkottai Panchayat Union Office had earlier staged a sit-in protest on behalf of Disha (December 3 Movement) over several complaints received in some gram panchayats for persons with disabilities in the Hundred Days (MGNREGA) program. After a 1 hour struggle the Regional Development Officer held talks with our State Deputy President Mr V.Mohanraj District Administrators and Branch Administrators on December 3 in the presence of the Police Inspector.

The struggle was halted because we accepted the 5 demands in it and destroyed the commitment to implement it.

Requests are given below:

1.100 day work program to provide work

  1. The full salary for the disabled is 256 rupees in full to provide
  2. More than 4 hours a day for disabled people do not force yourself to work
  3. Except for work suitable for persons with disabilities do not force yourself to do impossible work
  4. Use the record separately as for disabilities

Opening Ceremony of new office for Kallakurichi DPO Association of December 3 Movement, Flag hoisted by Prof. Deepak Nathan(D3M Leader), Mr. Ram Robert(Leprosy Mission)

December 3 Movement Leader Prof. Mr. T.M.N. Deepak opened the new office and name board of Kallakurichi District Integrated Social Service Disability Association (DPO). And this was followed by the flag-raising of the December 3 movement by the special guest from Leprosy Mission, Mr. Ram K. Robert hoisted their flag and made a special speech

Corona relief items were donated to the Villupuram Puthiya Alai Association in Villupuram District. And the December 3 movement was led by Professor Mr. T.M.N. Deepak delivered the keynote address by hoisting the flag of the December 3 movement in Villupuram district for the first time. At the end of the program the members were given identity cards and the program ended well.

Place: Kallakurichi,Villupuram District, Tamil Nadu, India.

கள்ளக்குறிச்சி மாவட்டம் ஒருங்கிணைந்த சமூக சேவை மாற்றுத்திறனாளிகள் சங்கத்தில் டிசம்பர் 3 இயக்கத்தின் தலைவர் பேராசிரியர் திரு. T.M.N. தீபக் அவர்கள் புதிய அலுவலகம் மற்றும் பெயர் பலகை திறந்து வைத்தார். மற்றும் அதை தொடர்ந்து டிசம்பர் 3 இயக்கத்தின் கொடியை சிறப்பு விருந்தினரான TLM நிகழ்வு ஒருங்கிணைப்பாளர் திரு. ராம் கே ராபர்ட் அவர்கள் கொடி ஏற்றிவைத்து சிறப்புரை ஆற்றினார்

Prof Deepak Nathan and Leprosy Mission Ram Robert hoisting December 3 Movement flag

New Education policy is not suitable for the disabled. December 3 Movement

புதிய கல்வி கொள்கை மாற்றுத்திறனாளிகளுக்கு ஏற்ற வகையில் அமையாததால் மாவட்ட வாரியாக மாற்றுத்திறனாளிகள் எதிர்ப்பு தெரிவித்து வருகின்றனர்….. தற்போது விழுப்புரம் புதிய அலை மாற்றுத்திறனாளிகள் சங்கத்திலிருந்து……இடம்: விழுப்புரம் மாவட்டம், தமிழ் நாடு,இந்தியா.

District wise person with disability people are protesting as the new education policy is not suitable for the disabled. Currently from Villupuram Puthiya Alai Disabled Association.....
Location: Villupuram, Tamil Nadu. India