Interview with Melissa Ortiz, disability activist and blogger
Dustin Siggins: What is your disability?
Melissa Ortiz: I have congenital, neurological malformation with hydrocephalus. That’s a big, fancy way of saying part of my brain did not form properly. Unlike other people, the fluid between my brain and spine isn’t correctly balanced, ever, because the malformation sits on the canal that controls the balance. The imbalance is either too much in one area – my head or my spine – & not enough in the other. I can’t have a shunt because it makes the problem worse. Also, I’ve had meningitis four times.
DS: What does this mean in a practical, day-to-day manner?
MO: It means I have very little balance, which is why I use a wheelchair. The way I walk is totally different from anyone else’s – I look a little like a cross between a duck and a drunken sailor on leave. My brain can tell my legs what to do, but the signals get crossed. (Dr. Ben Carson could explain this much more technically and clearly than I can.)
I also have petit mal seizures, which basically make me appear to be daydreaming. In reality, my brain and body are seizing. I can still sort of hear what’s going on, but internally, with regards to my hearing and awareness, it feels like I’m swimming underwater and through molasses.
This is why I have Lucy the Dachshund, my companion of 10 years. She’s 14, and has been a very good friend throughout all of those 10 years. She enables me to be medication-free because she alerts me when seizures are coming, so I can prepare for them. She can sense them because, when your body chemistry changes, so does your smell. When my body chemistry changes because a seizure is coming on, she can smell it and tell me.
Preparation is different in different situations. For instance, If I’m talking to someone, or doing a speech, I simply let the person/people know “Lucy just alerted me. I’ll be back with you in a minute.” It’s like taking a commercial break, admittedly a tiring one.
DS: So why are you at CPAC?
MO: I love conservatism. CPAC has been such a huge encouragement for me. I think, whenever we are in the political climate we’re seeing, we need to get together. It’s like church – you need that weekly boost at church or synagogue to get you through the week. We also need the community that comes from like-minded people.
I am here as an event planner as well.
There are two other reasons I’m here. I’m launching a new project called “Overtaken.” The website will go live sometime this week. It’s called YouAreOverTaken.com. The site aims to raise awareness and build consensus, bringing people from all sides together to fix our situation of overspending & unsustainable debt. We don’t have a revenue problem, we have a spending and mismanagement problem.
The name came from the reality America faces – whether or not you contributed to it, you’re being overtaken by the debt. It’s the same thing Rep. Bachmann (R-MN) talked about in her speech, about the intergenerational theft going on right now.
Lastly, I’m here because, even though I am still very proud to be one, conservatives don’t get it as far as disability issues go. Neither side gets it, honestly, but conservatives get the bad rap. Liberals make it look pretty by patting us on the head and saying, “Aren’t you cute, aren’t you sweet, let me take care of you.” Whereas conservatives do nothing or don’t do well the things they TRY to do.
DS: What can conservatives do? Are you advocating more government to help the disabled?
MO: We as conservatives need to take the lead, including by hiring people with disabilities who have something to offer so they can get off of the government dole. One reason why people with disabilities are Democratic voters is they are held captive by the system. Most people with disabilities that I talk to are conservative whether they realize it or not at the beginning of our conversation. They may have amazing skills, training and education, but they don’t have equal access to jobs for whatever reason, so they are on the government dole. It’s a sad, demeaning reality for many people with disabilities.
People with disabilities want to be able to do the same things able bodied people can do. I was stunned beyond belief to be told that I could not sit in the front at CPAC because no way to ask for wheelchair access area was offered in the registration and I didn’t have a VIP pass (I couldn’t afford one) so that limited me on-site.
In the Americans with Disabilities Act, when you have open registration for a public event, you are required to have an accommodations request spot in registration process/forms, so someone who is disabled can receive the help they need. The usher flat told me today that in order to sit close to the front I need a VIP pass. What about someone with hearing or seeing problems? That’s unfair to them. It took having a corporate sponsor walk up and offer me HIS VIP pass to fix the problem. What happens to people who aren’t assisted in the moment like that?
DS: Well, it sounds like you’re saying conservatives need to be more thoughtful. But that takes a long time, whereas the Big Government folks would say a law is faster and more efficient.
MO: That’s stupid. There is already a law in place, and fat lot of good it’s done in some situations. Conservatives are the party of caring, and I know this. I have never seen more generous people out of their own pockets by their own choice. This is one area, though, where conservatives still struggle. We don’t want to be seen as condescending or enabling, or insulting…so we do nothing at all, instead of asking disabled people “What can we do to be more inclusive?”
Here’s a story for you: A few years ago I was working on a project on Capitol Hill & I had to be on both the House and the Senate sides. As I was coming through security out of the tunnel underneath the Capitol building from the Senate side, a House Democrat, who will remain nameless because you would know his name, came up next to me and patted me on the head and said, “Aren’t you just the cutest little thing?”
I was stunned, and though it was hard to hold back my words, my initial reaction wasn’t even to bite him (The security guard standing there, who knows me, later said he was afraid I was going to bite the Congressman because I was so mad. I was just so stunned, I didn’t know what to say. I just smiled brightly, and said, “Thanks. Have a nice day, sir.” And I went on my way. There was nothing else to do, because I didn’t want to perpetuate the stereotype of the ticked off cripple/disabled person.
I went on to my appointment from there on the House side. I felt bad for the Chief of Staff with whom I was meeting because he was clearly uncomfortable and didn’t know how to talk to me. I looked him square in the eye, and told him, “Talk to me how you would want your sister, mother, female friends, etc. talked to in my situation.” It helped a lot. He immediately relaxed, and said he was afraid of offending me. I laughed, because I am not easily offended when it comes to this issue. Surprised at what people come up with, yes, but offended? No.
That’s when I realized how bad the problem is. It’s indicative of not just disability issues. We across-the-board in America have forgotten how to talk to each other like human beings.
DS: So what are the top three steps conservatives can take to change their image within both the disabled community and the media?
MO: First, conservatives need to showcase disabled people who are making a difference in the conservative movement, who aren’t angry, who are hardworking, etc. I faced down Occupy Wall Street protesters all but by myself at the 2011 Americans for Prosperity Defending the American Dream Summit – security wouldn’t let me leave because they were afraid hundreds of protesters would rush the building, and they were blocking the wheelchair ramps. The footage you can see at the link is prior to my leaving the building. I was in there for an hour, because the police didn’t do anything. The link also has the entire interview that CNS did with me about the day this happened.
American University did an interview with me about it, because it was the campus Democrats who were the main instigators masquerading as Occupiers. They actually said they weren’t blocking me, because I could get out through the garage ramps. They’ve obviously never operated a wheelchair, especially a motorized one, on a ramp designed for a car. The angles are so steep in some garages that my chair would flip if I tried to navigate them.
Second, we need clear about things we’d change and HOW we would change them… things we’re going to do. We need to be very clear what we’re going to do to give opportunities, replace entitlements with better options, etc. One-third of people of voting age are disabled in some fashion, if you include men and women hurt in battle and those with intellectual disabilities of some sort. Of that third, 75% are either unemployed or underemployed. This is not because of a dearth of education or skills. It’s because the perception has been created that it is expensive or unwieldy to make reasonable accommodations to allow disabled people to function effectively in the workplace.
Finally, we need to listen more than we talk. Volunteer with an organization serving people with disabilities, like Easter Seals or Luke’s Wings (www.lukeswings.com). Learn the lingo. I don’t like the lingo because it’s so PC, but it’s a practical reality in the disabled community. Get to know the reality of living with a disability.
The bottom line is this: Conservatives need to ask themselves “How would I want to be treated if I had a disability? How would I want a family member to be treated if he or she had a disability?” When you come up with good answers to those questions, act on that answer.
DS: Final question: Above, you said the ACU should have set aside seats for people with disabilities in the main ballroom. To play Devil’s Advocate, this is an organization that has to make money – shouldn’t a disabled person who wants to be treated equally simply pay the same as any other VIP-seated person? Also, isn’t it at least partially on the disabled person to reach out and ask?
MO: It is absolutely on me as a disabled person to act on what I need. It is my responsibility. I reached out to the ACU, and nobody got back to me.
Regarding profit, they have to make a profit, of course. However, there are disabled people who are unemployed or underemployed who simply couldn’t afford the money for a VIP pass that would allow them the appropriate access. They’d like to come and go to things, but they know they won’t be able to get through the crowds, etc.
They don’t need to set up a whole row, but if they offered the option, they could see how many they’d need. Not all need to be in the VIP section, but do SOMETHING. Offer SOMETHING on your website, etc. It’s not insulting. It’s appreciated.
Here’s a great example of getting it right: I go to the Weyrich luncheon every Wednesday here in DC, which is run by Colin Hannah, Morton Blackwell and Bob Thompson. Bob figured out a place for me to sit where I could see, be a part of things, that would be safe for my chair and keep it out of the traffic flow. He reserves that spot for me by putting my name on the same way he reserves a spot for a Member or a Hill staffer that is coming and needs easy access to a seat that will allow a quick exit. It didn’t take much effort. They did it to make sure I was comfortable, and could participate fully in the meeting. They asked me, and we worked it out. I love it because I can fully participate, and it wasn’t a big deal.