Writing a state law isn’t that difficult, it just takes time. A long time and you need a politician to support the bill for you. A bill is a proposed law introduced to the state legislature. A bill is written and given to the Secretary of the State who assigns it a number. Then it’s reviewed by a committee and voted on. Sounds simple but it’s not.
I saw a need for a state law to educate teachers about seizures in California. My daughter, Vivien, has had Epilepsy since the age of two. More than 3.5 million people have Epilepsy in the United States. In California, there are 400,000 people with epilepsy, and 60,000 of those are children. California has more children with Epilepsy than any other state but is not required to train teachers to recognize seizures.
I wrote to every politician in the state but learned if I wasn’t in their district, they wouldn’t talk to me. I focused on the three politicians in my district. There was a Senator, Congresswoman, and Assemblywoman. The Assemblywoman was the only one that held Town hall meetings. The other two were impossible to contact.
One town hall meeting I attended was early in the morning on a Saturday at Starbucks. There were a dozen senior citizens who came for free coffee. They rambled on about health care and crime but no one provided a solution. It was all emotions. I realized why the other two politicians didn’t do meetings.
After an hour I was able to ask a question directly to the Assemblywoman. I asked if she would support an epilepsy bill. She agreed and directed me to one of her field representatives. I handed a young woman my contact information and an outline of the Epilepsy bill.
The next Monday I went to the Assemblywoman’s office and introduced myself to her staff of four. The earliest meeting with the Assemblywomen was in six months. I waited patiently.
During our first meeting, the Assemblyman was very nice and agreed to name the bill, Vivien’s Law, after my daughter. However, I would have to wait another 6 months for the bill to be written.
I waited patiently again.
I started a Vivien’s Law Facebook page and asked members of the Epilepsy community to join. This was a mistake. I was bombarded with hate mail from anger mothers telling me to stay out of politics. I was disappointed and took the page down because I got tired of the threats. I was also contacted by my local Epilepsy Foundation. They urged me to give up and let them handle the law. I never knew there was so much anger in fundraising.
Over the next month, I found similar bills that had been passed in other states online. I was able to use those laws as a template and write the bill myself. This saved time. I made another appointment and was able to meet with the Assemblywoman three months earlier. She had the flu and our meeting was brief but she liked the bill and would pass it along.
A month later I was contacted by the Assemblywoman’s field representative in Sacramento. The bill was slightly rewritten by an attorney and was being reviewed by a committee.
A few weeks later I had a meeting with the Teachers Union and the Nurses Union who were both against Vivien’s Law. They didn’t think teachers or nurses needed to be educated on seizures and thought it would cost too much money. After a lot of arguing I was able to get them to agree on the bill but we would have to wait until the Legislation returned from their break to get the bill number.
I waited patiently. A few days after the Legislation was in session I got an email from the Assemblywoman’s office. Someone else had submitted a bill similar to Vivien’s Law. I tried to save the bill but there was nothing I could do. My emails and phone calls went unanswered.
Vivien’s Law was dead.
The Assemblywoman was running for Congress now and her attention was focussed on campaigning. My hard work felt wasted with nothing to show for it. The hardest part was breaking the news to Vivien that there wasn’t going to be a law named after her.
Like my grandfather used to say, “Almost only counts with girls and hand grenades.”