Amy Ainsworth is the mother of 5 year old twin girls, whose appearance together, in photographs is surprising and fascinating at the same time – how could it be any other way when you see a pair of big green eyes showing off from behind brown curls of one of the girls, next to the coffee-coloured eyes and black, straight hair of the second twin?
When she is not looking after her girls, Amy takes pictures, writes or holds public presentations. Her main subject is however not connected to the secrets of photography nor to the art of writing. Amy talks about what the life of a person suffering from epilepsy, depression and obsessive compulsive disorder looks like- that is, her life1.
“There are many forms of epilepsy. Mine is prefrontal or temporal and uncontrollable. This means that there are a lot of things I cannot do (like driving), and the fits are incontrollable.” (Amy Ainsworth)
Amy knows no frustrations. She doesn’t keep a record of the ones not knowing or unwilling to treat her well. She is free to talk about herself and feels it is worth it to make the life of people suffering from one or more neurological and psychical disorders more visible, through her own story.
With this purpose in mind, Amy classifies and describes, with deep lucidity, both her needs and, implicitly, those of the ones which, like her, are confronted with various mental disorders, as well as the inappropriate reactions or attitudes of people which she came in contact with, in different stages of her life. There are 4 big categories of situations which a person suffering from a mental disorder is faced with in his/her life, says Amy: 1) the attitude change; 2) identity defined by disability; 3) fixation on healing and 4) insult.
The attitude change
The attitude changes of the ones coming in contact with a disabled person can be dived in four large patters, says Amy. Some people become way too nice when they realize they are in the company of a disabled person. This type of reaction conveys that the latter is not regarded as a normal person, as he/she would like to. Others presuppose the disabled person is implicitly less intelligent and start behaving as such. A third change of attitude comes from the ones making unnatural efforts to include those with disabilities, either out of pity, or out of a sense of moral responsibility. At the opposite pole, there are also the ones which exclude disabled people, because they think they are incapable to integrate in certain activities, without even thinking or asking if they want to be involved. Such unilateral exclusion decisions strengthen the disabled person’s limited view on life and rob them of the possibility of choice and self-determination.
Identity defined by disability
Disabled people long for their identity to be recognized – unique in its complexity, instead of exclusively being regarded through the lens of their disability. They hope people will notice their character traits, talents, abilities, willpower, tastes, passions and ambitions. Disability is just a part of their lives and they don’t want that to receive disproportionate attention.
“My challenge is to look at what I can do, not to live by limitation. It is true, I might not be able to drive a car, but that does not stop me from getting where I need to go. No, I cannot do things spontaneously, but I have learned to plan in detail for cases in which something might change, either for good or for worse. No, I cannot work in a normal office space, but that does not mean I do not work. No, I cannot get a college degree, but I can and am still learning. I have learned to find ways to go around problems. I have learned to adapt. And yes, I believe in God, just like you do!”2
Fixation on healing
Amy pleads against that type of battle for “healing” which absorbs all energy and turns into an obsession. “We are all imperfect”3, she says, having in mind not submission in the face of illness, but the acceptance hereof and a living a fulfilled life in the given context. The obsessive fight to become “normal” is just an additional burden for a disabled person. Life can be lived fully and happily even if a chronical suffering is part of it. This is the belief worth having when approaching the subject of disability.
It is not the elimination at all costs of the illness which is the goal, but accepting the reality, including the necessary treatment, and improving the quality of life.
From this perspective, others’ well-meant efforts, which believe empathy manifests best by perpetually seeking a solution, prove, in the end, superficial. When you continually talk to someone about healing and recovery, you are actually perseveringly saying he/she is “broken”. Amy does not see herself as “broken”. There is room for authentic care from those around her, she adds, but this must be kept away from the tendency to focus communication on the abnormal situation of the disabled person and on the search for solutions. Aside from a healing solution, a person with neurological or mental disorders needs normal interpersonal relationships.
Out of all four categories, this is the hardest to manage. A person with special needs must learn early on to cope with intentional offence and harassment. This aside, there are few who realize how often a disabled person is being accidentally or involuntarily offended. This is why Amy advises the ones eager to avoid indirect or accidental offences, to quit asking simplistic questions a person suffering from depression has probably heard a thousand times before: Have you seen a psychiatrist? Have you tried treatment X? The overly spiritual or didactical concern which looks to see whether or not a sin or lack of faith, will or discipline which hampers healing is the case, is also not welcome.
All churches are faced with the most widespread scourge of the century – mental disorder – and the danger of harmful and blamable approaches can be diminished only through planning and strategical actions targeting not only people suffering from mental disorder, but also their friends and family, as well as the entire community of believers. Such an integrated approach must follow certain essential principles.
Depression, the souls’ killer
Almost 50% of the adults suffer from a mental illness at some point in their life. More than half of these experience moderate to severe symptoms. Actually, 4 out of the 10 main causes for disability among people older than 5 are mental disorders, depression being the main cause for all illnesses causing disability4.
Globally, approximately 300 million people are affected by depression. Women are more affected than men.
The bipolar disorder affects almost 60 million people. Schizophrenia is a severe mental disorder, affecting approximately 23 million people from around the world, while around 50 million people suffer from dementia5.
An assertive community…
Research has shown that strong social support can significantly improve recovery in case of mental illnesses6. And the church, where the model of Christ’s body is understood and lived out, in which all believers are the members of one another (Romans 12:5), can and must become an authentic and efficient support source for people suffering from mental disorders.
…informed and educated…
A church must first inform and educate its congregation to understand the nature and complexity of mental disorders, but also to eliminate urban myths concerning this aspect. In the context of strategical planning, the church can invite specialists to get believers acquainted with protective factors against mental disorders: stress and adversity management; adaptability development; individual autonomy development; continuous cognitive stimulation; the role of physical exercise in the case of mental disorders; developing feelings of security; self-control; wise parenting, positive parent-child interaction and secure attachment; solving-problem skills; pro-social behavior; cultivating self-respect; acquiring social and conflict management skills; socio-emotional development; efficient forms of social support from family and friends for people with mental disorders7.
…is a source of encouragement and counselling…
The deep encouragement and wise words of many members of her church have been the fuel Amy used to support her bold journey to this day. The time the church pastors spent with her, was for Amy a resource she was able to convert into trust, and their spiritual counselling, as well as the wise prudence with which they recommended specialists, have been that wise form of guiding from which Amy has profited a great deal.
…acceptance and wisdom…
What was very important for Amy was the openness of those she processed her doubts and anxieties with, and the availability of those who accepted to answer hard questions about God and His involvement in the life of disabled people. Such opportunities, scattered along the years, have contributed to the solid spiritual experience and maturity Amy uses today to analyze her life and perspectives.
…which creates connections, involves and loves.
“At church, during the program of the explorers’ group, in the youngsters group, in other small groups, in prayer groups nobody is excluded! In most years of my adolescence and youth, I was a victim of bullying, except for the church!”2
The activities the church organizes for young people, which allowed her to travel in places where she otherwise wouldn’t have been able to go, the opportunity to sing in a choir, to become part of a mime group or to be the leader of a youth group or of the team responsible with public worship have helped Amy overcome her phobias, lack of confidence, self-doubts, uncertainties and fear of failure. Being an introvert by nature, Amy believes the church is the one who helped her become a public speaker.
The church is not only able, but has the privilege to follow Christ’s ministry example, which was concerned with man’s holistic wellbeing.
People suffering from mental disorders are not the community’s weak spot or a stress factor, but brothers and sisters whom God wants to offer a fulfilled life. With such a perspective, the church will understand that the efficient approach to this problem should follow the ability people suffering from mental disorders have to take control of their own lives with full confidence in God, the encouragement of the use of treatments which improve self-help skills, family education and support for efficient care, as well as making certain formal support mechanisms available, whenever possible. This is the mission of Christ’s church for those suffering from mental disorders, one capable of identifying resources which would otherwise remain hidden and of creating relationships which would otherwise remain inactive.
Norel Iacob is Editor in Chief of ST Network and Semnele timpului.