If the Web is really what I worked very hard in hopes of it becoming – a platform for social as well as a technological peer-to-peer have/need approach to the world – then this post should stand as one of the most important things I have ever done whether you understand that or not.
In the past year we’ve all had devastation of some sort, none of us gets out of this life without extreme pain. That the entire world is chaotic and in what I perceive to be the darkest of times in my 50+ years here appears to be the general sentiment of the vast majority of humanity speaking up.
My work ethic isn’t a healthy one. I’m insanely over-productive because of a damaged, hard-wired belief that my entire being is worth nothing, and that I have no right to life. This was what my father told me both in action and in literal word for word communication. That I amounted to anything at all is down to my strong mother and ME.
And in the near past, the one man that ever loved me for who I am as I am, my husband Ray, who is in hospice and will die within the week. A noble and great soul, a US American Hero, a social justice warrior, a rural physician who took care of this nation’s poor and disenfranchised, street people – for nothing more than a thank you or some eggs and chickens or just because. That’s the man I married – a person far greater than I. And that is who I am losing, a piece of myself that is also far greater than I.
I could have sat out this entire life and career on disability as I received that 100% at the age of 24 (so 30 years, longer than the Web). But I couldn’t. So what I did accomplish in this world and for our industry while dealing with the unfolding of what was a 30 year brutal and rare disease because doctors thought I was “just depressed” or “malingering” is impressive to me. It mitigates, at least slightly, the overwhelming sense of self-hatred and failure that’s been my main demon since I was a very small, and once very joyous, little girl.
I remember the first day I went to work at Opera Software, I climbed up a hill through feet of snow and was exhilarated. I was also hemorrhaging, and did it anyway, my blood on the white fjords of Norway an image imprinted on my brain not as sorrow, but as pure resolve and courage to live life no matter what.
A person doesn’t do what I did for money. I did it for idealism. For reasons to improve the world using the digital medium – the Internet, and yes, I was here before the Web doing this – and then the WWW for the entirety of its lifespan, albeit not my own.
I have social and financial needs as my family and friends are all far away or engaged in terrible losses or issues of their own, or really just faux friends, moronic ex-lovers and others who I foolishly thought love would heal. I have a cowardly and unethical blood sibling who considers himself a social advocate but shows me absolutely no empathy and who has not seen me in more than two years despite living mere miles (I’m told) from me.
Weakness is the man who thinks himself more important than the rest of the world.
Where are my friends with “Net Worth” – so many of them have it and they aren’t around. Where are the wealthy employers who don’t recognize it’s against Federal Law (as we still know it as of this second) to terminate a disabled woman in good standing and on medical leave much less at such a time? My advocates, attorneys and ombudspersons are the only ones now standing up with me, at my side. I have to burn others to be okay? How is that possibly conducive to peace, kindness and everyone’s dignity? It isn’t. And yet, it was so easy to burn down mine, so at what point do we continue to turn the other proverbial “cheek” as it were?
Want to break a digital and social divide and help me as I watch my husband leave this world and our beautiful time together, as I struggle to regain my own health, as I move to another state where I can get the resources and protections afforded to me that Arizona simply does not have the resources nor social stability or market to provide? Want to fill in the gaps of humiliation, abandonment and the disposal of what I recognize as my often chaotic, manic and hyper-intense but ultimately loving and decent human BE-ing?
If you’re reading this far, then you care or feel guilty and you can put that to use by doing one or more of the following:
- Donate money. Yes, I’m done feeling like a beggar. I was paid 1 dollar to every man’s 10,000 for my keynote talks. I received 4% of gross earnings on a book that made the author a lot of money and me around 565.00 USD. I did not know I was giving so much away for free, and back then I was young with life ahead and could have used that money to not end up homeless and penniless and buried in medical debt now for both me AND my husband’s care that was not covered by insurance – more than a quarter of a million dollars. So yes, sure, go ahead if so inspired and donate via my GoFundMe medical fundraiser please: ThanksMols!
- Offer accessibility rights advocacy and orgs money and time. My preferred organization is of course Knowbility and they need you. Go and do something good so others have opportunity. They are a loving and caring group and will move the universe if it is within their means. Give them some means – sweat, commitment, kindness, work, money.
- Stop perpetuating a Web and Web apps that are inaccessible and harmful. For me, this has especially harmed me with the lack of user controls in motion graphics, flickering animations, too many moving animations on a page – um, these are well-known legally binding issues. Learn WCAG, use the rules, adhere to them, advocate for them and if you don’t know how – get in touch with someone who does. Better yet, HIRE someone or a full team to advise you of your legal obligations to your site and app users, engineers, employees and the world. THE WEB MUST REMAIN AN ON-RAMP FOR HUMANITY.
- If you have other resources that can help at this time – I have a household filled with furniture, clothes and items that have value but am too exhausted and overwhelmed to sit here and try to organize a sale. Do you know of a fair liquidator for household furnishings, art, appliances and so on?
- Do something kind for another person. Not spontaneous acts of kind. Intentional acts of kind. Every single day.