I address this to you, the person who does not (yet) actively support the campaign for rights, service and system reforms for the disabled and for their family caregivers.
A bit about me: I’ve been on this challenging journey with my precious son who is severely disabled with profound medical needs and a life-limiting condition for over 12 years now. In those 12 years, I have never stopped trying to educate, advocate, create positive change and help support those on this journey with me. I established a national non-profit charity in America which, for 8 years, raised awareness nationwide about the common virus, cytomegalovirus aka: CMV, that damaged my son’s brain while I carried him inside of my body. The foundation also contributed toward research for a vaccine against CMV. Back here in Ireland now, I continue to work raising awareness of issues surrounding families who are caring for their children with severe disabilities. All the while, I am a single parent to my 2 sons, both of whom depend on me to be the best mother I can possibly be.
I have lost my much loved professional career because keeping down a job while caring full-time for a totally dependent, disabled, medically fragile child is frankly impossible without support. My own health has been involuntarily sacrificed as the constant stress has spawned an autoimmune disease which pains me daily; my back is literally crumbling with degenerating discs under the weight of lifting my son for 12 years; and my mental health has been put to the test time and time again battling depression and anxiety. Relationships have failed. Friendships have withered away. Hobbies, such as hiking in the mountains and taking leisurely walks to work on photography, have long been forgotten. Retirement funds once set up in hopes of a secure future in my old age no longer exist, giving way to the desperate goal to instead simply make ends meet, keep a roof over our heads and food on the table.
This is reality.
I address this to you, the person who does not (yet) actively support the campaign for rights, service and system reforms for the disabled and for their family caregivers.
A bit about you…MAYBE:
Maybe you don’t know anyone with a disability. Maybe you do, but it doesn’t affect your life, so you don’t give it much thought. Maybe you even don’t want to think about people with a disability because you don’t think they contribute to society as a whole, so really why bother. Or, you could be one of those people who thinks that people with disabilities are just a burden on society, sucking up the taxes of hard working people like yourself, and that they won’t ever be working and therefore “contributing” to society? (Before any of you get your feathers ruffled at that last comment, let me say that I have heard that very thought from more than one person over these past 12 years!)
Which one are you?
I am challenging you to look deep within your own mind, your own heart, and ask yourself WHY don’t you find it worth your time to actively support the campaign for rights, service and system reforms for the disabled and for their family caregivers.
I started this piece telling you what I have done. No, I am definitely not patting myself on the back, because often times I think I must be half-mad to keep doing all I am doing. But you see, I truly believe in doing what is right, for speaking up for those who cannot speak up for themselves, and for trying to make this world a better place than how I found it. I did it before my son was born, and I will continue to do so for as long as I live.
And listen, we ALL have “other things” to keep us too busy, to focus our energy on, that we can use as a convenient reason for why there just isn’t time to speak out in support of disabled children and their families. I get it. Really, I DO. Like I said above, I am pretty damn busy as well. That is precisely why I don’t buy the “I’m too busy” excuse. So, I ask YOU again to examine your own heart and mind and ask yourself, what is it that is keeping you from fighting for these rights, service and system reforms in order for our severely disabled children and their families to have a positive and fair life experience? What exactly is it that stops you? Do you support animal rights? And if you do, is it because you have pets that you love but not a disabled child that you love so you can’t relate? Did you have the rainbow colours overlay your Facebook profile photo during the equality campaign last year? Did you march for it even though you are straight but because you knew this was what was fair, because love knows no bounds? Are you getting my drift here?
Is my son, and children just like him across Ireland, not worth your time, too?
Once again…
I am challenging you to look deep within your own mind, your own heart, and ask yourself WHY don’t you find it worth your time to actively support the campaign for rights, service and system reforms for the disabled and for their family caregivers.
