What if you packed for a trip to Italy, but when the plane landed, you woke up in Holland; how would you feel? Think further about the fact that you would have been trying to learn a few Italian phrases, you were excited about the sites, and your mouth was already watering at the thought of gelato, pasta and wines that you would try. Yet, you ended up somewhere else? Would you feel disappointed, angry, lost? Well, this is how Sophia and Nigel Nicholls poetically describe their reaction to the birth of their first child.
Sophia and Nigel, members of the Seventh-Day Adventist Church, were undoubtedly quite excited to welcome their first child. They didn’t want to find out the gender of the baby but wanted to revel in the surprise of their gift from God. They thought about all the activities their child would do and all the things they wanted to share with this baby. 21 years ago, they welcomed a son, Matthew. Sophia recounts that one look at her son after he was born made her realise that something was wrong. The doctors later confirmed that Matthew was born without one of his eyes, and the other looked quite cloudy, like a cataract. He was born blind.
Sophia, Nigel and Sophia’s Mom (Matthew’s grandmother), decided that they would learn all they could in order to help Matthew live the best life possible. The grandmother, who was a teacher, went and retrained to be able to work with blind children, just for Matthew’s sake. As Matthew grew, they realised that he was facing more challenges than blindness. Matthew was diagnosed with Autism. He is a non-verbal autistic person. Matthew’s grandmother again decided to be retrained to work with children with special needs, and Sophia decided to read all the books she could find about Autism.
Sophia and Nigel shared that if you were to end up in Italy, yet you ended up in Holland, you could spend the time being disappointed and angry, or you could use the opportunity to explore and appreciate a new, fascinating place. They recognised that despite the challenges, Matthew was still a gift. He had many beautiful things about his own personality which they needed to understand and appreciate. Matthew loves music, so he would tap the glass at the dining table. If someone is speaking to him or singing, he is sometimes seen with his finger in his ears, yet he is not being rude. In those moments, Matthew is actually playing with the sound, and it is something he finds quite fascinating.
Sophia and Nigel, went through several stages as they learned about Matthew and the challenges he would face. The first stage was shock and denial; then came anger, embarrassment and shame. After that, there was some depression and detachment. Then came the dialogue and bargaining phase, where they actively sought out persons to talk to and realised they were not alone in dealing with autism and blindness. Importantly, the next phase was acceptance, and it saw the family exploring all the options they could on behalf of their son. After that, came the phase of returning to a meaningful life, when you realise you can cope with the challenges.
As devout Christians, Nigel and Sophia wanted to maintain an active church life and also share that with Matthew. Churches are thought of as really inclusive spaces, but have you considered how welcoming your church is of persons with disabilities? What are the attitudinal and infrastructural challenges that persons with disabilities may face? Nigel and Sophia came face to face with those questions when they attended a church conference. They decided to take Matthew to the children’s section of the event, but they were greeted with a sign on the door which read, “We do not cater for special needs children.” Churches are supposed to be a place where everyone feels like they belong, but Sophia and Nigel just realised there was no place for Matthew. Along with that, they started to reflect on the fact that Matthew’s vocalisation in church often earned him disdainful, or at best, annoyed, glances. Were other persons in the Adventist church facing these challenges? How did other parents feel? What could Nigel and Sophia do?
According to Nigel Nicholls, “It took Matthew with his eyes closed, to open my wife’s eyes and mine that there was something that we needed to do.” In 2001, Nigel and Sophia founded the Adventist Special Needs Association (ASNA), a charity that supports parents who have children with disabilities in the church. The aim of the ASNA is to raise awareness of special needs in the Adventist church and to promote inclusion and involvement of people with special needs.
I first learnt about this inspiring story, about how Matthew’s blindness gave his parents a remarkable vision for this organisation when I visited my Aunt’s church in Birmingham. The Northern Conference of the Seventh-Day Adventist Church in England was having their Children’s conference, and amid the wonderful presentations from children’s choirs, this was one of the important topics of discussion. As I sat there and listened, I just thought how fantastic this was. It is noteworthy, too, that the entire church service was served by a British Sign Language interpreter. How thoughtful! Or, is it just the right thing to do? I began to wonder what were other churches doing to facilitate persons with disabilities. In the spirit of bearing each other’s burdens, how does your church support parents of children with disabilities? Herbert Humphrey once said, “The moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; those who are in the shadows of life, the sick the needy and the disabled.” If this lens was to be used to assess your church, would they be found wanting?
Sophia shared that many parents of children with disabilities can feel alone in the church, because of the attitudes and also the lack of access. She also indicated that these parents need all the support that they can get. In terms of attitudes, Sophia has encountered persons who believe that the parents of children with disabilities must have committed some sin, or they claim that the parents do not have enough faith and that is why the child has not been healed. There are others who believe that they can pray everything away. Sophia, while affirming her solid belief in prayer, says she refers to those behaviours as ’Spiritual abuse.’ Being careful to not denigrate prayer, Sophia says, “ We must remember to not treat God like a magician.” She also believes that it is important to interrogate the assumptions that have led some persons to pray the disabilities away. Sophia believes it is important that, beyond prayer, churches try to understand the disabilities, understand the challenges that the parents face, and try to be sensitive and supportive. Interestingly, Nigel shared the story of Mephibosheth from the Bible, who was physically disabled and unable to walk. In those days, persons with those disabilities were shunned. Yet, in an unprecedented move, when David became King, he had Mephibosheth eat at his table in the palace for the rest of his life. That is the example that other Christians and churches should emulate.
Many times when we talk about inclusive spaces, we forget the church. We do forget that in churches, persons with disabilities need more than prayers and pity. Sophia spoke of three key things for people to understand when working with persons with disabilities:
* Understanding difference
* Building relationships – (this is essential and has to be intentional)
* Being creative
Sophia also spoke of a need to address attitudes and environment in churches, because these are the two areas where barriers are erected for persons with disabilities. Ensuring there are clearly marked wheelchair accessible bathroom facilities, having an audio system to enable amplified hearing, deaf awareness training, maybe even having extra wheelchairs on hand. Churches could also coordinate weekly activities and community outreach to include persons with disabilities. Investing in learning sign language, even if there is no one in the church yet who needs it, is a way of showing loving kindness and being prepared when someone deaf actually comes. I was pleasantly surprised that that conference of the Seventh-Day Adventist church has engaged a trainer to go around to different churches and train the congregations in sign language; this in an attempt to make the church more inclusive. Also commendable is that the church has a ministry of disability, diversity and inclusion.
Events like the Paralympics have helped to change some attitudes to persons with disabilities. It is good to have persons with disabilities represented in such a positive way. Churches can also be examples. Churches can be supportive to congregants who have children with disabilities, and get creative with activities to include children with disabilities and enable their participation.
Sophia is a passionate champion, and Nigel is a caring father. I learnt so much from their story, and it left me thinking about what can be improved in some spaces. I was grateful for the opportunity to meet Matthew. When I went over to him and said, “Hello Matthew,” he stretched out his hand to shake mine. That made me smile.
For more information on the work of ASNA, please visit www.asna.info/think.
How inclusive is your church?