Jessica Ní Mhaolain, who is now applying for her PhD, explains how a rare eye condition meant her school years were a struggle for resources that were often not available
AT THE beginning of my Leaving Cert year in September 2009, if someone had told me that in six years time I would be compiling a PhD application, I would have laughed in their face.
That winter, I was struggling with the thought of even sitting my Leaving Cert. I had given up the ‘college dream’.
My Special Needs Assistant (SNA) hours had been cut earlier that year in the aftermath of a short assessment of my needs, with the end result that I struggled through most classes because ‘the hours aren’t there for you’.
It was as simple as that — I had made it this far, but because the access to resource teaching and SNA time was being reduced across the board due to factors such as the dwindling of public funds coupled with an increase in the number of children needing supports, I was going to lose out.
In order to make sure we all had some level of support, everyone’s supports were reduced. It’s like cutting a cake in quarters to share between four children, only to realise you have half the cake to start with.
Since birth, I’ve had a vision impairment known as Oculocutaneous albinism and an involuntary eye movement known as nystagmus, which prevents me from focusing my eyes.
Because I’ve never had ‘full sight’, I can’t really explain what I can see to a fully sighted person.
— Irish Examiner (@irishexaminer) July 12, 2016
I explain it by telling people that when I read the eye chart at my doctor’s surgery, I can only read the top line — one solitary letter. Coupled with the nystagmus, school was a struggle for me.
But, it wasn’t impossible.
Mainstream school was still an option given that I had the right supports to put me on a level playing field as the other kids in my class.
When I started primary level in the late 90s, there was no legislative requirement on schools to support children like me, and I struggled despite supports provided by my school.
However, following the introduction of the Education Act 1998, state-funded services began to filter down to children like me. I mentioned in my recent open letter to Education Minister Richard Bruton that I feel, even now, that these services came a little too late for me and I missed the basics of my education. Yes, I have gone on to graduate with two degrees — one of which is a Masters — but that is due in no small part to the support I received from the Assistive Technology wing of the Disability Support Service in UCC.
And it’s also due to my parents having the resources and strength to support my education.
But when I was in secondary school, the State reduced my classroom support. There was no SNA support available to cover my biology class and this forced me to drop the subject — which was a required subject for my chosen college course.
I had two options: drop to five subjects and give up on university, or find a teacher to homeschool me.
Luckily, my parents had the resources to find and finance a fantastic biology teacher to work with me on a one-to-one basis and cover the entire curriculum. But that is it — luck. A luck that others don’t always have.
Needless to say, I did well in my Leaving Cert and made it to college.
And so here I am, more than six years later, applying for a PhD. During my time brainstorming for a thesis subject last year, I began to think deeply about my journey through the education system. While I’ve done fairly well, I have struggled to secure services and to have my needs accepted in some circumstances.
Luck was on my side for the most part, but I began to think about the children who didn’t have luck on their side.
When my thesis concluded that there is an issue with service provision in the special education system, despite provision in the legislation, I felt almost duty-bound to follow up on it.
My first instinct was to go down the academic route, and base my PhD application around further investigating the service provision in special education.
While writing my application however, I began to contemplate how much of my education was down to luck. And that really worried me.
Life, at times, can be difficult for someone with a disability because the world isn’t made for people like us. So we must adapt each and every day. And when you are fighting this ongoing battle, other things can fall by the wayside — such as your education.
The fact that I have now made it through the system has lead me to feel almost responsible to ensure the struggle I faced does not fall on the shoulders of another child or teenager.
Yes, the world isn’t made for people like me and I don’t expect that to change anytime soon — but the education system must be adapted for each and every child.
In my view, there are no ifs or buts about this. I intend to continue following up with the Minister and the National Council for Special Education (NCSE) each month, focusing on different issues I have identified in different sectors of education, starting with primary and moving onto second level.
Already, I have noted a number of issues that I will bring to the Minister’s attention, such as the absence of a multi-disciplinary team in Scoil Cara which caters specifically for children with autism and intellectual difficulties, and the overall reduction of resource hours by 15% due to an increase in service users. In his first reply to me, the minister indicated that service allocation of SNAs has not changed, and he is correct — it hasn’t.
However, what has changed is the increase in children entering the education system who are in need of special education supports. In this regard, while allocation has remained high and increased this year, the reality within classrooms is that more children are sharing the service which is leading to an overall reduction in the access to the services for these children. Similarly, there are also issues surrounding the amount of National Educational Psychological Service psychologists which are available to carry out assessments on children, particularly those in primary education where early intervention is most important.
As many parents of children with special educational needs will know, these assessments are the first step to acquiring services for a child.
And yet the State reinforces this initial barrier to obtaining services to allow children begin their education on an equal footing to others.
There are many issues and solutions, big and small, that I’m hoping to detail for the Minister. Many are nationwide issues.
It’s unfortunate that in 2016, the idea of “cherishing all the children of the nation equally” is still a lofty ideal we read about in the Proclamation, and not a founding concept that the education system is based upon.
© Irish Examiner Ltd. All rights reserved