Legislative aide for assembly member Ted Lieu, newly elected chapter president for Little People of America and new parent—Dan Okenfuss has a lot on his plate. Dan sat down with me last week to talk about the LPA organization and his life outside of work. For information of chapter and national meetings, please visit the LPA website at: http://www.lpaonline.org
What do you do for Little People of America?
I am chapter president, just got elected, of the Sacramento, San Joaquin Valley chapter, which runs up from near Redding to Fresno. Geographically it’s a huge area that comprises about three to four hundred members of LPA.
LPA is an organization for helping people with dwarfism which is generally considered someone who is 4’10’’ and under, obviously not just children but people who have a form of skeletal dysphasia, a kind of medical condition that restricts someone’s growth. There are over 200 forms of dwarfism out there.
The LPA is strictly volunteer; I still have a day job working at the Capitol. We meet monthly for chapter meetings. The meetings are mainly social, but they are also out there to connect people that are interested in dwarfism or have dwarfism themselves and need some assistance regarding more information about their medical condition.
We serve to educate people. We tell our members what kind of rights they have when they enter a school. If you’re a parent and you have a child with dwarfism, you want to know the best way to approach your school for reasonable accommodations for your child and we help you with that. We also provide career advice, college, etcetera.
It’s an interesting organization because it serves members of all ages. I became a member of LPA shortly after I was born. My parents realized I had dwarfism and a social worker pointed them in the right direction and said you should consider joining LPA.
You’re a very involved volunteer.
Yes, I’ve been in the Sacramento area for about seven years, before that I lived in the Washington, D.C. area and was active in the D.C. chapter. I’m originally from Cincinnati, where my parents still live. They have an active chapter there too.
There are about fifty chapters around the country based in large metropolitan areas. We’re also broken up into fourteen districts, multi-state districts, here in California we’re paired with Nevada. We have a very active district with about five or six chapters.
What made you move from D.C. to California?
I used to work for a company based here in Sacramento and they had an office in Washington D.C., where I was. But I also met a girl from California at the same time, so I asked to transfer to headquarters here. That worked out for a few months and then I found a job at the capitol working for Dario Frommer and now with Ted Lieu.
It always seems to be a girl, doesn’t it?
Yes, she’s my wife and we now have one son we just adopted from Vietnam last year. He’s three years old; we adopted him when he was two. My wife and I traveled to Vietnam last year and worked with all the paper work needed to get him. He has dwarfism too, so does my wife, so all three of us are active LPA members.
That is a huge undertaking, what made you decide to adopt?
Well that’s one of the other great services LPA offers. It connects us to an adoption network. So if there are children out there who are born with dwarfism and they are orphaned or abandoned, a lot of adoption agencies contact LPA because we have a waiting list of eager parents waiting to adopt.
My wife and I were on that waiting list. We had no preference, no geographic area, no ethnicity or racial background or gender. Finally we got an email about this little boy from Vietnam and we’ve worked hard for these last few years to go and get him. His name is Hai. Its Vietnamese for “big body of water” or “ocean.” We kept his name because we thought it was really unique, so he’s Hai Alexander Okenfuss.
What do you do in your spare time?
Yes, I do a lot of bicycling, I even commute when I can and when the weather permits. I also have a hobby of home brewing, brewing beer, although, now that I’m a parent it’s kind of hard to stay on top of that hobby. And of course now with this undertaking of being a chapter officer, it’s a step up to probably my greatest after-hours undertaking.
We also have a very active parents organization not only for parents of children with dwarfism but also parents, like us, with dwarfism who have questions about the developmental issues involved in raising such children. We meet with that group and we also have regional meetings twice a year in the spring and fall in a location somewhere around California or Nevada.
How do you deal with people being insensitive on a daily basis?
It’s a challenge. We try to make a fine impression whenever we’re confronted with some who, not necessarily ridicules us, but just is curious as to who we are and why we’re little. You get those questions and that’s what you really appreciate because you try to educate them, you know. You say, “Yes, I was born this way, I’m not going to get much higher than 4’6’’.”
We like to educate people; there are very derogatory terms out there for people with dwarfism. We are human beings. We are born from average-sized parents, so it’s not like we’re some sort of different species.
I think we’ve been benefiting from a lot of media exposure lately. A lot of networks have been airing documentaries and reality shows featuring people with dwarfism. That’s been really helpful. It kind of demystifies us, and the more we’re seen in the mainstream media, the better.