“And think not you can direct the course of love, for love, if it finds you worthy, directs your course.” – Kahlil Gibran*1

This is so true. At least in my experience, it is.

As soon as I read it, it resonated with something within me; it felt so familiar, like I had known this quote from ‘way back when’, rather than from a facebook post I just read. 

This quote describes what it is to be a special needs parent. Being a parent to a child with special needs, requires you to have a bigger-than-normal heart; to be more patient than Job (who I argue wasn’t really that patient), more creative and “out of the box”, more tenacious, and more courageous than any warrior. These aren’t qualities that are inherent in everybody, and even where they naturally exist, they are certainly not in such degrees. 

The love you have for your special needs child, if you decide to let yourself love, is a force that changes the course of your life. In my case, Paapa has redirected my life in every way possible. It’s as if once I chose to love him, (and I firmly believe that love is a conscious choice), that was the end of my control. Love took over, was a palpable force that would not let anything stand in its way.  My priorities, notions about family, happiness, success, faith…everything changed, including the course of my career. I never thought I would be a disability rights advocate and researcher. When I was contemplating doing postgraduate psychology, I eventually narrowed my choices to studying children with disabilities/special needs ed., or “reconstructing” the minds of child soldiers in post conflict zones, and even there, had I not moved into law,  I may well have gone with the latter area. I definitely was not thinking about disability rights/ conditions of life/ society’s perceptions of Persons with Disabilities when I began studying law. My favourite subjects were Jurisprudence and Criminal Law, and for a while I thought I was headed to the AG’s Dept to make sure the bad guys were dealt with, and in my leisure time, I would indulge in some Dworkin/ Hart/ Rawls/Raz etc reading!

It took one child, one life-changing condition, to properly direct my focus. For the first time, there was somebody I loved in a way I never had before. And because of this love, my interests, wants, needs all changed. Now, I want to move, to do something,  to make a difference in the lives of children &persons with disabilities, their families and caregivers.  As an academic, that means undertaking research, seeking to influence policy &/legislation on disability, generating enough material on different issues relating to disability in order to push the discourse on disabilities (particularly as it impacts children and the family), and change the current (mostly) negative narrative. For me it means promoting a language & policy of disability that recognises the need for inclusion, respect for diversity, acknowledges that PWDs and their families, can be, if properly and appropriately empowered, effective and important contributors to Ghana’s development.

I find that there is a passion for my work now, that I did not have before. My focus is grounded in a way that is different from what it was before. In school, I was an excellent student first because there are no other options in my family, where academic/other mediocrity is taboo (lol), and then also for my own pride, I guess. Now,  I no longer want to excel because I am expected to, rather, I have to excel to be an effective force in driving policy in the direction I mentioned above.

I used to be afraid of being “the weakest link” in the rather strong chain that is my family, and that fear propelled me to work ridiculously hard in school. Now, I invest time, other resources in my work,  because I have a goal that is bigger than me, society/family standards, awards / laurels, and indeed, bigger even than my Paps.

The work has just begun, and with disability being still an “evolving concept”*2  I know that it is far from complete. But I don’t mind the small steps; this is my way of “brightening the corner”*3 where I am.  

There are so many things that I want to do now in disability research, rights, and policy, and I pray that I will have the strength, and the passion to do them all. 

If this is truly what Love can do, then I am privileged that love found me worthy. 

 

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*1: I saw this quote on the Facebook wall of an old WGHS classmate. Jamila Abdulai, thank you for writing this today, it has had a huge impact on me.

*2. The Preamble to the Convention on the Rights of Persons with Disabilities

*3. From the hymn, “Brighten the corner where you are”

* As always, I #Walkwithyou.