Hub Coordinators Meeting & Sharing on Multiple Sclerosis

21 May 2022

The regular virtual meeting of the Hub Coordinators took place from 3 – 5 PM over zoom. 

Multiple Sclerosis is a disability listed in the 21 types of disabilities outlined in the Rights of Persons with Disabilities Act 2016. However, veru little is known about this invisible disability. We therefore invited Mr. Naman Sareen, currently living in Chennai, to share with our hub coordinators about the challenges of living with MS. 

Mr Naman Sareen is a 31 year-old young person living with MS since he was diagnosed in 2007. Naman explained that MS was a disorder that affected the central nervous system, but it progressed and manifested in different ways for different people, and led to differing levels of disabilities for each person. Naman shared how he dreamed of once again being able to run and feel the wind on his face, and not need to use a walker to help him walk stably. He hoped more people would take time to understand MS, and was happy to share more links and resources to help us understand it better. 

ED is thankful to Naman Sareen who took time to share his story with us and we commit to spreading the awareness about MS and educating ourselves about MS in the ED hubs and networks. 

Each hub present then shared their updates: 

The Dehra Dun hub had successfully conducted the ED Uttarakhand Regional Conference in March 2022. It was a one and a half day conference that brought together church leaders, NGOs, and seminarians. The goal was sensitising, resource sharing and cross learning between churches. The need for a shorter version of the ED tool kit for senstising churches was expressed in this conference, as also the need for more hubs as Dehra Dun hub was now supposed to cover 3 states. So the possibility of identifying people who can take forward a hub in Mussorie was suggested. A follow-up training for deacons in the local seminary that attended the regional conference is also being planned. The six-month CBID course facilitated by the hub in Herbertpur has 30 participants of which six were church leaders as well. The hub also reported that 12 participants will complete the Beyond Suffering course. There is also a plan to hold a Family Retreat in Herbertpur Christian Hospital for 15 families touched by disability from 7 – 9 June 2022. 

Mr Augustine Ponraj of the Madurai hub reported a training in livelihood options and employment for 45 persons with locomotor disability. This was a training offered by the government and offered a certificate and a stipend. The Madurai hub also held an orientation for parents and siblings of children with hearing impairment and intellectual disabilities to enable them to handle the children when they go home for vacations. The Madurai hub also reported having participated in the Child Champs event organised by the Church of South India in which the hub enabled children with special needs to showcase their talents. The Madurai hub plans to hold a meetingon disability inclusion for junior presbyters in the month of July. 

Mr Martin Sam of the Bangalore hub shared that the catholic Archdiocese of Bangalore now had a plicy on disability which they will share with us. The Directory on disability related services in Bangalore also had been completed and will be shared on the archdiocese website soon. Information about a mass in sign language at St Patricks church in Bangalore held every 2nd saturday was also shared. There were also plans through the commission on disability of the Bangalore archdiocese to start special mass for persons with disabilites. 

Prof Rajashekar of the Hyderabad hub shared that they had successfully held one virtual pastors meeting on disability inclusion, and is planning another one to be held on 9 June 2022. Their monthly day of prayer on the 15th of each month and regular hub meetings every last saturday of the month continue to take place regularly. 

Mr Moses Gour of the Nagpur hub shared that along with NCCI, a programme that brought together 28 NGOs to discuss labour concerns had taken place, and in this meeting the participants had been sensitised about disability inclusion and concerns. Participants were drawn from 12 districts of the Vidharbha region. A regular in-person meeting of the hub was also planned for June. 

Dr Lazar of the Kerala hub shared the advocacy efforts taken to represent for reservation for persons with disabilities in aided schools in Kerala. It was an uphill battle as some schools had represented in court against this reservation being given. The hub coordinator also shared that a need had been expressed through the movement headed by Sr. Lucy Kurien that had 19 centres for women in distress and women with disabilities, for a home for persons with disabilities in the Kerala region. Dr Lazar also shared that he had the opportunity to share and provide sensitisation in a state level seminar in Ernakulam about activities related to disabilities. He also shared that there was an effort to organise a function in June in Mallapuram, to celebrate and honour the kills and achievements of about 30 people with disabilities who have excelled in their respective fields. 

Mr. Doullalem Nehisial of the Manipur hub shared that through the Mission to the Blind (MTB) an awareness for missionaries and pastors in the Manipur area had been organised. He also shared that through MTB a one-day seminar for the visually impaired was also being planned on 26 May 2022. He also shared that persons with disabilities in Manipur met for fellowship every month in one of their homes. 

The hub coordinators along with the National coordinator then discussed plans for organising city-level pastors meetings to raise awareness on disability inclusion in the coming months, as run-up events to the ED National Conference that was to take place in November 2022. 

The National Coordiantor also shared the dates for the National Conference and requested hub coordinators to plan to attend and encourage others to attend as well. 

The hub coordinators were also urged to share the ED Disability Inclusion Audit with more congregations in their locales so that the information could be used to compile a study on the status of disability inclusion in churches in India that could be shared in the upcoming National Conference in November 2022. The directories on disability related services in each location that was to be compiled by each hub was also discussed and it was hoped that more directories similar to the one created by Bangalore hub could be compiled in time for the National Conference in November as well. 


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