I apologize in advance because some of this may not be of any interest to many of the readers who subscribe to my blog but I wanted to write a post about it here for a couple of reasons. One is that I haven’t blogged since November and this post is partly an explanation for my absence – I want to give you all a reason why I’ve been too upset to write, rather than just jumping straight back in the saddle (not that there’s anything wrong with that ) The other reason is, I just need to get this out there. I need to write down how I’ve been feeling and I hope it will be read and will give some of you pause for thought. A good friend of mine, Lara Cross Benefield, has been feeling the same in many ways and I’m hoping she will share with you in a subsequent post how this has impacted her.
As many of you know, since May of last year, I have been involved with a website and Facebook community called A4cwsn. I promoted the community on this blog and I still believe the website provides a valuable service – a video review of apps that parents can view before deciding whether to buy. I was admin on the A4cwsn Canada Facebook page and appreciated the opportunity it gave me to get to know some truly wonderful people.
For those of you not familiar with the A4cwsn community, the last couple of months have been very tumultuous. A number of long-term supporters have been blocked from it’s Facebook pages and villified as “haters” by the page owner (Gary James), his wife and his supporters. I don’t intend to rehash the details of what has happened here, it’s too painful to me personally and its of little interest to anyone outside the community, who are already aware of what’s transpired.
So, what am I trying to say with this post? Well, there’s a question that people have been asking that I think I can provide an answer to. In answering that question I’d also like to share some reflections I have had that, in my opinion, are important for all special needs parents to consider, whether they have been involved with A4cwsn or have never heard of it before. The question many people have asked myself and others is a reasonable one – how could we have been involved with A4cwsn for so long and not have raised concerns earlier?
In answering this question, let me first provide a little context. What really drew me to A4cwsn in the first place was apps. I already had iPads for my boys due to the fundraising I did on my own and the generosity of friends, family and strangers. Over the course of a few months the focus of A4cwsn moved from apps to iPads, specifically raising funds in order to give iPads to special needs children. This is a laudable cause and one I naturally gravitated towards given the benefit I have seen in my sons since they received their devices. Gary launched his campaign to give 50 iPads to 50 children in 50 states and the idea struck many of us as bold, ambitious and exciting – we could work together to tangibly change lives. However, as time progressed there were a few issues that some of us were finding it increasingly difficult to understand. Why did we have to raise money to cover Gary’s fuel and accommodation costs so he could drive across the U.S. and deliver all the iPads personally when Apple ships for free? Why was Gary so aggressive with respect to his timeline and in pushing everyone to finish raising the money needed as quickly as possible? Why was there so much pressure put on individuals and developers to donate?
In early September some of us got an answer to that question. At that time, Gary told four of us that he only had 3 to 6 months to live. He had publicly stated before that he had survived two bouts of cancer so this revelation didn’t come completely out of the blue but nonetheless, all of us experienced it as a huge shock. Despite the urging of some, he didn’t want this information disclosed to the A4cwsn community and we were asked to keep it a secret. In private, those of us who he had told realized that many things we had questioned now made a lot more sense. Gary was pushing to complete the 50 iPad campaign and we pledged to help him because this would be his legacy. We didn’t understand his choice to spend so much time away from his family on the 50 iPad tour and in fact we doubted whether he would be well enough to complete it. However, we supported his choices because they were what he wanted. We put up with emotional abuse from Gary because we believed he was dying.
After the 50 iPad tour was over we expected there would be a focus on getting Very Special People Inc. (VSP) up and running as soon as possible. VSP would be the non-profit organization affiliated with A4cwsn. After all, someone who was terminally ill with such a short time left to live would surely want to ensure that all the elements of a succession plan had been put in place, right? What slowly became apparent however was that everything was business as usual as far as Gary was concerned. We weren’t going to wait until VSP had received tax exempt status; in fact we were going to, not only continue, but ramp up our fundraising efforts as much as possible. Since the 50 iPad campaign, three new GiveForward accounts have been set up with Gary James as the beneficiary. The “iPad 4 the Holidays” campaign raised $6,145 and this fundraiser ended on December 4th. There are currently two active GiveForward accounts with funds in them totalling $4,369.
Assuming the prognosis Gary’s doctors gave him proves to be accurate then his family will be mourning his loss at some point during the next few weeks. At that time, what happens to the A4cwsn monies still in his personal bank account? What happens to the money in the GiveForward accounts of which he is the personal beneficiary? What happens to VSP and A4cwsn and the hopes raised in the community that VSP would provide, not just iPads and apps, but jobs for stay at home parents and therapies for their special needs children? Let me be clear here, with respect to Gary James I am not saying that he has scammed anyone but I do have very real concerns about thousands of dollars of other people’s money being in the hands of a terminally ill man with no safeguards in place.
Together with my friends, I was a part of building a community I loved. To be rejected by that community when all we sought to do was protect it has been hard. Not only have we lost something that was an important part of our lives but we’ve been subjected to calumny and vitriol, just for doing what we felt was the right thing. In reflecting on the broader lessons I’ve learned as a result of this experience, many of the salient points have been covered by three of my friends in a recent joint blog post. Rather than repeating them here, I’ll just give you a “linky do” (new phrase learned from a friend)
In addition to the points made by Lisa, Jill and Caryn, I would like to add one extra thought. Caryn eloquently argues that our strength as a community can ironically be used against us. I agree and would add that what makes us especially vulnerable is the fact that so much of our lives are conducted online. All the friends I’ve referenced in this post (and incidentally, my partner) are people I have met via the internet. Twitter, Facebook and other social media sites are where we find support, people who understand us and answers to our many, varied and complicated questions regarding our children. We’re used to trusting people we meet online because without our online community in many cases we wouldn’t have a community at all.
For this reason alone I would suggest that all of us need to apply a higher standard to those who claim to help special needs families. In my opinion these individuals and organizations need to not just act legally, but they need to act in a way that is above reproach. There should be more accountability required of these people, not less. As special needs parents we must act to ensure that the bar is raised higher when it comes to our families and refuse to settle for the bare minimum in terms of protection.
For those of you who are wondering where the title of my blog post comes from I’ll paraphrase some lyrics which, for some reason seem to encapsulate how I feel about losing a community that was a source of fun, information and most of all, support. My apologies to Cat Stevens for mangling his lyrics and to you all for the mawkish sentimentality, but hey, it’s my blog and I’ll cry if I want to:
I gave you all of my heart
but there’s someone who’s torn it apart
if you want, I’ll try to love again
I’ll try to love again but I know
The first cut is the deepest, baby I know
The first cut is the deepest
’cause when it comes to being lucky she’s cursed
I still want my friends by my side
just to help me dry the tears that I’ve cried
I’m sure gonna give it a try
and if you want, I can try to love again
I’ll try to love again, but I know
The first cut is the deepest