3rd Annual Autism Awareness Tree Lighting Ceremony 2016

Her Excellency Mrs Reema Carmona Address at The 3rd Annual Autism Awareness Tree Lighting Ceremony 2016 Entitled “Light It Blue”

Her Excellency Mrs Reema Carmona address at the Tree Lighting Ceremony for Autism Awareness at the Bandstand in the Botanical Gardens on April 14, 2016.  The following is the entire content of Her Excellency’s address.

I stand with you in total solidarity, not as an “occasion person” at an “occasion event”. We are tonight celebrating for the third year running, the United Nation’s designated month for Autism Awareness.  During this month, and every month of the year, think about all persons in our country and the wider world, living with the condition Autism Spectrum Disorder (ASD) or living in an ASD environment.  Recognition and deepest appreciation must therefore go out to the soldiers of care, understanding and compassion, and I speak of caregivers, parents, siblings and advocates who experience daily, the overwhelming financial, emotional and social challenges associated with ASD.  ASD can range from mild to very severe, is often misunderstood, and misperceptions and sheer ignorance about the disorder, can isolate and stigmatize persons with ASD as well as their families.  This is why we are here tonight, we are the vanguard, each and every one of us present, playing an important role in ensuring, that those living with ASD, are provided with the necessary support and treated humanely with respect and compassion.

This symbolic lighting of a tree, is both an inherent and proactive part of our efforts to remind individuals, every time they see that blue tree or think about it, that ASD is an ongoing battle that must not and cannot be ignored.  Now, have you ever wondered what happens when you flip a switch to turn on a light, TV or computer?  The flipping of the switch accomplishes something. In its simplest form, you are completing an electric circuit, allowing a current to flow through the wires.  All of us sitting here today can be compared to that switch!  Why?  We are the designers, implementers, monitors and evaluators of policies and programmes in all political, economic, corporate and social spheres. We have become the measuring tape that ensures that inequality and a lack of opportunity are not perpetuated on persons living with ASD.  It is therefore a collaborative effort.  We need communities, corporate Trinidad and Tobago, ASD advocates, advocacy groups, caregivers and families who have the first-hand knowledge of what the face of ASD is.  Because of this insight, they are the flow of current that will spark more comprehensive awareness campaigns and greater expansion and innovation of research initiatives.

The message of the United Nation’s 2016 Theme: “Autism and the 2030 Agenda: Inclusion and Neurodiversity” should awake in us all, not only a call but a deep desire for institutional and social change and action.  It requires of us, to advance our understanding and the society at large of the most intricate aspects of the human mind, so that we allow those who are neurodivergent, to live their lives as they are, rather than being coerced or forced to adopt the status quo of accepted ideas of normality, or to conform to some skewed scientific model.

I have to state the obvious, because sometimes the obvious is not fully appreciated.  Many of us don’t want to think about it, but one crisis lived every day, by every parent with a child with disability and specifically, an autistic child, in a society that does not care enough, comes in the form of a constant thought or idea, a real apprehension, and it is simply this, “What is going to happen to my autistic child if I die?”  Another parent with a child with disability may ask, “What is going to happen to my child with cerebral palsy or Down’s Syndrome if I die?”  What is there in place in this society to accommodate the inevitable?  Regrettably in 2016, no one can comfort such a parent in this society of ours.  That simple question should trigger action, a clarion call for all in our society to do something about it, not tomorrow, not next week or next year but now. I am therefore appealing not to the politician in the politician, not to the money in the business man but the human being in the politician and the human being in the business man to help put in place the requisite holistic environment.  One imperative must be implementable legislation to give real support to the road map laid down by the United Nations Convention on the Rights of Persons with Disabilities.  Why not consider, The Persons with Disabilities (Equal Opportunities) Act No. 31 of 2014 of Bahamas?  This Act aims to achieve equalization of opportunities for persons with disabilities; to eliminate discrimination on the basis of disabilities; to provide rights and rehabilitation and habilitation of persons with disabilities; to establish the National Commission for persons with disabilities; and for connected purposes.

Our Nation is rich with talented individuals and innovative minds, some of which should be dedicated toward understanding ASD, in order to develop therapies and teach coping inclusive skills to those that need it.  It is crucial to remember that diagnosis is the first step to understanding and assisting those with autism.  Early intervention for children is proven to provide better outcomes. Given that children can be diagnosed as early as age two, let us educate pregnant mothers about the signs, symptoms and developmental milestones that are indicative of ASD.  Studies suggest that late diagnoses are directly linked to parents missing early warning signs and a great part of this, is due to a lack of education and institutional support for genuine childhood development.  Only yesterday morning, on an early morning talk show, Ms Khadine Ali, an Autism ABA therapist stated that the waiting list of a year or more to see a pediatrician to determine whether a child is autistic is the norm, because there are only three such specialists in Trinidad and Tobago and she to is here with us tonight to give support.

Just next door, in Barbados, speech-language pathologist, Ms Sue Mc Millian runs a programme called “The More Than Words Programme”, a training programme for caregivers and parents of children with autism who sometimes face an unforgiving public.  Many families in Barbados have admitted like in Trinidad and Tobago, that one of the biggest struggles they face, is being able to go out in public with their children as people are not very understanding or tolerant of the children if they are having a tantrum or become uncontrollable.  Perhaps we need to employ more guidance programmes of this nature in our society to assist parents and caregivers to not only properly care for autistic children but more importantly to ensure that they live quality lives through public human interaction.  In Barbados they take them to their safe beaches.  We should be using our gardens, parks and savannahs more often.  A false sense of shame must not hinder human interaction.

Quite often, persons with ASD are perceived as unstable, incoherent and sometimes even violent.  As a society, we must therefore educate our citizens on the signs and symptoms of ASD so that we do not inaccurately label individuals as socially dysfunctional and react unintelligently when we socialize with and respond to ASD citizens.  In this regard, law enforcement officers and other persons that deal specifically with the behaviour and conduct of citizens, must be trained to acknowledge a person with autism rather than simply placing them in a troubled, deviant and anti-social category.

Consider for example, the case of one, Danielle Jacobs, a US citizen, in a first world country, a woman who suffered from Asperger’s syndrome, a type of autism, shot dead by law enforcement officers on the 5th February 2016 at her apartment.  She lived in Mesa, Arizona and worked at an Animal Rescue Centre in her hometown. Before her death, she recorded a video showing her having a meltdown and trying to punch herself, but her service dog, Samson, came to her aid and parried the blows with its paws.  On February 4th, 2016, a day before her death, Danielle sent an email to Heather Allen, President of the Rescue Centre stating that by the time she read it, it would be too late and she requested that Allen took care of the dog.  Allen tracked down Danielle’s address and called the police who indicated that they already had someone on the way down there.  When they arrived at Danielle’s apartment, she was holding a knife and the police believed that she was a threat.  The police having formed the view that she was suicidal, opened fire because of her erratic behaviour.  The shooting is less than a year after Jacobs bravely filmed herself being comforted by her service dog during a depressive episode to raise awareness about the Asperger’s syndrome.  On her YouTube channel she wrote, “This is what having Asperger’s is really like.”  Ladies and gentlemen, this woman was making a public cry for assistance and support, to deal with this disorder, only to have been ignored and shot one year later because her Autistic condition made her unstable.  Many opined that what killed this woman was not the bullet from a police gun, but rather their ignorance and lack of awareness of her condition and its manifestations.

As we strive toward first world status, the trials and tribulations of those with ASD, or living in an ASD environment must concern us all.  We must act as advocates for disability, equality and real genuine inclusivity for all.  More so now, we have to be extremely vigilant in this period of recession where social services might be cut back.  No one doubts that the times are trying but in effecting solutions, we must be careful not to forget the very vulnerable and persons with disabilities.

Let us in this month of April, advocate for greater investments in autism research so that we can better understand brain development and the inherent linkages between autism and genetics.  Let us create education inclusive centres, from day care services to tertiary level and improve treatments and services for people on the Autism Spectrum and their families at every stage of life.  Let us provide the necessary support for the families, not only in the area of job opportunities but ‘work from home’ employment opportunities which is quite possible in this era of technology.

This evening’s event must create a spark within our very consciousness to do something that will make a difference in the lives of persons with ASD.  Let us all join together and metaphorically flip the switch, to nurture a greater awareness and advocacy for those who are differently abled, in whatever form or fashion, because the fight for the differently abled, is a good fight, a Godly fight, one that must be universal as well united.
I thank you.

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