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Beth Case: Disability 411, Show Number 35.

[intro music]

Beth: Hello, and welcome to Disability 411, the podcast for disability professionals. I'm your host, Beth Case, and I am really excited because we have our first sponsor. I would like to sincerely thank Disability Blogger for being our first sponsor, and sponsoring today's show. You can find the blog at www.DisabilityBlogger.blogspot.com, and his sponsorship will help pay for the expenses of this show, which include providing transcripts, server space, bandwidth, and so on. If you are interested in sponsoring a show just like Disability Blogger did, then just check out our web site at Disability411.jinkle.com, and you can find all the information there.

So once again, check out Disability Blogger at www.DisabilityBlogger.blogspot.com, and show some appreciation for what he is doing for this show.

Well, a week or two ago I sent out a call asking for anyone who had suggestions for people with disabilities that would make good Christmas presents, and John Miller responded. Now, John is a frequent emailer, and I always love hearing from him and everyone else who emails me, and John recommended AllInPlay, which you can find at AllInPlay.com. I didn't play the games or anything on the site, but I did look around, and basically it is a game site that's designed so that people who are blind or have low vision can play games with people who are sighted, as well as each other. So it is a really nice idea, very inclusive, and it looks like they had some fun games there. There is a subscription fee, which is why it is recommended as a Christmas present. So thanks, John, for that recommendation, and you all check it out if you have someone you need a gift for who is blind or has low vision.

Now I want to respond to one more email before I move on into today's interview, and that is from a new listener named Judy. Hi Judy, welcome to the show. Judy had a question about my recording equipment, and I get this question quite a bit, so I thought that rather than just responding privately through email like I normally do, I would just announce it on the show. Now, her question was specifically about the equipment I use when I'm doing on-the-road interviews like I did last time, interviewing the guys at the AHEAD conference.

Basically, my portable setup consists of an iRiver Model IFP-899. This is the 1-Gig version of the IFP-799, which has less memory in it. The iRivers are sort of considered the podcaster's friend; a lot of podcasters use these for recording because they do such a great job. The downside is that they don't make this model anymore. Now, you can still get these on eBay for, I think I paid about $75 for mine, so you can pick them up pretty cheaply. They're small, they do a great job of recording.

They are a little tricky to get set up, so if you do get one, there are some places on the web where you can see how to set up your iRiver for recording, and recording podcasts at the right speed and everything. But the good news is that once you set that up, you only have to do it once, and then it is very easy to use. I do not use it for listening, because it would require me to reset some things, so I just don't want to mess with it. So I use this MP3 player/recorder just for recording podcasts.

Now, plugged into it I have a very simple Logitech microphone. I don't know the model on this one, but it is kind of a tall, skinny microphone, kind of designed to be plugged into your computer, but I got it because it was small. And I basically take that microphone and my iRiver, the appropriate cables and connectors, and I put them all into a makeup bag, and I slip it in my purse, and then I always have my recorder whenever an opportunity for an interview might come up.

Now I am actually using the iRiver today to record this part of the show, because I am trying out some new editing software. I have been using Audacity, which is free and is great, but it is a little bit limited--you always kind of get what you pay for--and so I'm trying out the Sony Sound Forge Audio Studio, and I'm really liking it for its editing capabilities, but I'm having some troubles getting it to record like I want. So I finally just gave up and said I'm going to record today's show on the iRiver, and I'll worry about learning how to record on it later.

So, I hope that helps answer your question about what equipment I'm using. As always, you all can email me with anything. It doesn't have to be disability related; if you have questions about podcasting or whatever, feel free to email me, Disability411@Jinkle.com. Also, if you are interested in podcasting, if you only listen to one podcast about podcasting, you should listen to Podcast411. There are lots of them out there, but Podcast411 is really a great place to get started.

So that's all the email I have this week. Let's get into our interview.

Today's interview is with Sarah Whitlock, who we talked to a couple of weeks ago. Her platform, when she was Miss Wheelchair Texas, was on women's health issues, especially for women with disabilities, so that's what I talked to her further about today. Hope you enjoy it.

[music]

Sarah, thank you so much for taking the time to let me interview you again.

Sarah Whitlock: Oh, it's a pleasure.

Beth: I got some good feedback from your other interview. People wrote and said how much they really enjoyed hearing about you, so I hope they'll enjoy this one too. Now, when you ran for Miss Wheelchair Texas, your platform was women's health issues. How did that become an interest?

Sarah: I just started to become more and more aware of how important it was to be healthy, not only emotionally and mentally, but physically, and a lot of times for people with disabilities, especially women, that is hard to do when it comes to dealing with women's health and wellness. So I actually had an experience--a very traumatic experience--trying to deal with women's health issues on my own, so I'll talk about that.

Well, I hadn't been to a gynecologist for two or three years, and prior to that I was, like, 23. So I had gone for a Well Woman exam when I was about 25, and I just didn't feel right physically. I was having some pain, and some other irregularities were happening--and if you're a girl you know what I mean--and I was just really uncomfortable. So I went to a gynecologist, and she did her thing, and she wasn't real concerned about what was going on with me. I wasn't regular, and I was like, "I'm hurting." And she just kind of blew me off. And I was like, "Well, I really don't know what to think." So I left there thinking, "OK, I'll just watch this, take the hormones she gave me." Then, a couple of months later, I developed pneumonia, and when I was in the hospital, there they found a huge ovarian cyst on my right side.

Beth: And the gynecologist didn't see anything or didn't notice anything?

Sarah: No. She didn't want to do the kind of test to see if anything was actually there. At that point I could actually see something growing, from the outside. Like, my stomach was getting bigger.

Beth: So you could notice a change, externally, to your body, but when you went to the doctor she didn't do a thorough enough exam to have detected it? Did you tell her that?

Sarah: I did. Then she referred me on to a surgeon after that, and even the surgeon was hesitant to do anything. I know that surgeons have tendency to err on the side of caution, but I was in a horrible amount of pain by the time I got to her, and I remember, even going into the operating room, she asked me, "Are you sure you still want to do this"--as in having it removed. And I was going under anesthesia, and I was like, "Yeah, take it out." She said that when she got in there, that it was a good thing she did remove it, because it was growing on my uterus and in my intestines, both my large and my small bowel, and if she hadn't have removed it I would have died.

Beth: Wow. So why do you think they were so hesitant? Because of other physical problems that you have?

Sarah: Well, honestly I don't feel like I was heard, and that was kind of confirmed in a way, because I had to keep going back to doctors over and over again. First of all, initially--I'll backtrack a little bit--it was difficult to find a gynecologist that I was comfortable with in the first place. So that's not a fun experience for anyone, first, because you have to make a lot of decisions.

Beth: It is kind of a very personal doctor's visit, and you have to have someone that you feel--everybody needs to have--a doctor you feel really comfortable with in that kind of exam, I think.

Sarah: Well, and for me, I have a lot of spasticity because I have spastic cerebral palsy, and so I had to go about doing the exam differently, and it took two or three people to actually complete the exam. So that was fun. A little circus.

Beth: So then you have to find two or three people that you feel comfortable getting that personal with. And I am just imagining all the guys listening to the show going, "I don't want to hear this." But it is important.

Sarah: Right, and guys, please know that you are affected by women's health, because 1100 men alone will develop breast cancer this year. I know that's a small amount, but that is still 1100 men. Plus, if you have a mother, a sister, a wife, you are impacted by all of these issues. I mean, where did you come from? Hello! I mean, you wouldn't be here if it weren't for women's health.

Beth: Yeah, exactly.

Sarah: So listen up!

Beth: So that kind of explains how it became such an important issue to you.

Sarah: And there are just some interesting statistics that I want to bring up, that really sparked my interest as I got more into the research end of things. A woman is diagnosed with breast cancer approximately every seven minutes.

Beth: Wow.

Sarah: Ovarian cancer is the fourth-largest cause of death among women; and cervical cancer is so treatable if women can just get to the doctor, or if they'll go.

Beth: If you don't mind me interjecting a little personal note here, I had a cancer scare a couple of years ago, with cervical cancer. I had to have surgery, part of my cervix was removed--so this is more personal with my audience than I have ever gotten before. Basically, the doctor had said that--and I had kind of put off my exam, because you get busy, and you just don't want to make that appointment and go in--and she said that if I had waited six more months, there was more than a 50 percent chance it would have become cancer. So I have become a real strong proponent of, you get your annual exams no matter what, because I felt fine, I had no symptoms at all. But I can see how, if you are a woman with a disability, especially a physical disability, where that kind of exam might be a little more difficult to do, or you might have to see a doctor that has more experience or expertise...

Sarah: Oh definitely. Sometimes you, in fact, as the patient, become the advocator for that doctor. And while that experience isn't necessarily the greatest in the world, looking back it is so worth it. My doctor may not think she is a whole lot smarter, but whenever I go to her now with a problem, she jumps on it right away. So I guess I made some headway there, and hopefully maybe I helped save some lives in the process, too, so that's all that matters.

Beth: So what can we do to help educate?

Sarah: OK, first of all, people with disabilities out there, my sisters and my brothers: get your exams done every year. Not every three years, every year. It doesn't matter whether you're sexually active or not. You can have other problems that can develop. Advocate, advocate, advocate. I know it's awkward, it's very humiliating, we experience those medical issues on a daily basis at times, but your life is in the balance here. No one is going to stick up for you, you have to be your own voice, and don't assume that the doctor knows everything, because you are the one who knows your body. Don't take no for an answer. Get second opinions, talk to anybody you can. If you need a ride and can't get there, keep banging on doors until you can get somewhere. I mean, just crawl there if you have to. I don't mean to sound dramatic, but one doctor's visit can make the difference between life and death, it really can.

Beth: Exactly. Just because you're not having symptoms doesn't mean that there might not be something wrong, like in my situation. You have just got to get there, you have just got to get the checkups.

Sarah: A lot of times, at least from my perspective, I have seen, this might sound kind of interesting. Like you alluded to earlier, because I have so many other physical issues going on, like the factors surrounding my disability, doctors really didn't consider the fact that I might have some gynecological issues. It is almost like you are dehumanized as a person, because supposedly you are asexual, coming from the medical standpoint a lot of the time. So therefore, how could you be having problems?

Beth: Yeah.

Sarah: And I know for people with cognitive impairments, it is even more difficult, because you are afraid, and you may not know or understand what is going on, and you might need some extra attention along those lines as well. But there are doctors out there who can help you, and if they won't, you can make them. You just have to be their advocate.

Beth: Are there any sort of advocacy groups or any kind of support group that can help people know how to approach their doctors, or help them find the doctors that are understanding?

Sarah: Not that I am aware of on the state level in Texas, but I know that some of your listeners out there may be aware of some resources that I don't know of. There is an organization in California called Breast Health Access for Women with Disabilities, BHAWD for short, and it focuses on providing accessible mammograms for women, and education. I don't really know of other resources that are out there. I know in Houston, in the Medical Centre, there is a clinic that focuses on sexual dysfunction for women with disabilities, but I am talking about the basics of women's health, just the things you need to know to stay alive.

Beth: Yeah. It just seems like there needs to be something. So listeners, if you guys know of anything or want to start something, count us in. I'm volunteering you, Sarah, but I think if there is anything we can do, even if it was just informational, just things like this show, getting the word out and letting people know how important it is. It might not seem like a big deal to get an annual exam, but it could be life or death, and just because you have a disability, yeah, it might become more difficult for you, but I think in a way it becomes even more important for you.

Sarah: Right. For instance, I know a girl who is 27 years old and she is wheelchair-bound, and she has never had a Pap smear because she doesn't feel comfortable enough to go to her doctor, a doctor that she has been seeing for years, because she is afraid that they won't be sensitive enough. Don't be afraid, you know? It's your life.

Beth: And you can shop doctors. Everybody can. If you don't feel comfortable with a doctor, even if you have been seeing him for ten years, well, you need to find a doctor you feel comfortable with.

Sarah: You deserve the best. You are kings and queens, people, start acting like it. Take care of yourselves. I think women, so much of the time we put ourselves last, and I think as people we do that, not just as women; but we have a tendency to be like, "Oh, I need to do this, I need to work, I need to get this done, or do that for this person," or whatever, and so we end up not taking care of ourselves, and that's the very last priority. We can't do that anymore.

Beth: You can only help others if you are healthy yourself.

Sarah: And when it comes to your life, your physical life and well-being, it's OK to be a lot selfish.

Beth: If there is a cancer, if there are other medical problems, sometimes early diagnosis is what makes the difference between life and death.

Sarah: And ironically, like I said, that's sort of how they found it, because I was having symptoms for something else, yet I knew something was wrong, and when they went in and did a CAT scan of my lungs and my side, when I had pneumonia, they saw the cyst. I mean, it was that big, and they could see it all the way down. So I'm so glad that I happened to get pneumonia, because I got the in-house care that I needed; and unfortunately, from that point I had to go through the long process of follow-through, but it was worth it. I'm alive! Whoo!

Beth: I've never heard anyone be grateful for pneumonia before. So is there something that we can do to help the doctors be more sensitive and more aware, so it is not just a one-on-one...

Sarah: Well honestly, I think that is going to become more of a problem due to managed care, because everybody is going to face that as we are now, and it is going to become more of an issue. So that is really a matter of the heart for doctors out there. If there is anybody willing to specialize in this, or if you're doing that, please keep doing that, because we need you. There are not enough of you out there.

Beth: It would be great if there was someone, like at medical conventions or conferences, or med schools, if that sort of awareness could be incorporated into a presentation or something.

Sarah: Yeah. I mean, they are out there, they are just hard to find; and there used to be more of you guys, so come on!

Beth: So, we didn't mean to scare you all today, in today's show, but this is a really important issue.

Sarah: Well, and you need to be scared about this, because it is affecting more and more of us.

Beth: Yeah.

Sarah: And it is so unnecessary, because all you have to do is go to the doctor. I know that is easier said than done sometimes, for us as people with disabilities, but there are ways, and I know that there are many issues like getting in and out of the office, and getting up on the table, and climbing in, but don't be afraid to tell the doctor what you need. Be totally uninhibited, because you are the only one that's going to be able to save your life, when push comes to shove.

Beth: I know we have been talking mostly about women who have physical disabilities, though you did mention cognitive disabilities as well, but I would like to throw in there, also, for deaf women. I know a lot of times people who have hearing loss don't go to the doctor because they are worried about the communication, or the hassle involved in the communication process, and I want you all to know, if you are not aware of this, that if you are deaf and you need to go to see the doctor, they have to provide you an interpreter upon request, and they cannot charge you for it. That comes out of the doctor's pocket, not yours, and they have to provide one if you request it with sufficient advance notice for them to arrange somebody.

So don't let the fact that you are worried about, "How am I going to talk to the doctor?" or "What if I don't understand them, or I can't get a family member who signs to go with me?" That is not an excuse. You can get an interpreter, a professional interpreter, confidential, so if there is something going on and you don't want your family to know about it, they are not going to know about it.

Sarah: Wow, that is such a good piece of knowledge to know.

Beth: Yeah, but don't let that get in the way, don't let them try to charge you for it, because that is illegal.

Sarah: Right. That would be like charging me for the use of a ramp. And don't be afraid to bring someone with you on your behalf, because I know it can be a pretty scary process, so it's OK to be able to have support. I know in some instances you may not want people in your immediate family to know.

Beth: But sometimes you do. Sometimes you want that backup, a friend or someone. Especially if you think something is wrong. It can be scary, and you want to make sure that you are totally understanding what the doctor is saying, and sometimes another pair of ears in the room...

Sarah: Right. Make sure, though, especially if--this is just from my perspective, as a woman with a disability--that the doctor converses with you directly and not your parents, because you are the patient. You are the one they are looking in and cutting on, you're the one with the hormones and whatever they are doing. So you should be the main concern, and the main individual to have the final say.

Beth: Right, right. Yeah, make sure they are talking to you. It's part of that self-advocacy, independence, and your rights.

Sarah: Right. You are a woman, fully capable. Don't doubt yourself. Understand that a doctor cannot refuse to see you because their office isn't accessible. They still have to find a way to get you physically in there, even if your feet are hanging out the room door. I have had that experience before, too. So fight it. Fight it because you are trailblazing for somebody else whose life you may very well save. And have the courage to embrace the fact that you are a woman, beautiful and capable, so you need to take care of yourself. This problem is not something you should bypass just because you have a disability. I know that we have so much going on in our lives a lot of the time because of our disabilities, so things get overlooked. Unfortunately, I think health issues, that happens a lot of the time because we are focusing on so many other things; but don't overlook it because that is the thing that will sneak up on you.

Beth: Sarah, you are absolutely amazing, and your passion is so contagious.

Sarah: Well, and if any of you guys are in the Houston area--I know a lot of you probably are--and you need somebody to go to the doctor with you, or you want the name of my doctor, feel free to pass your information on to Beth, or I'll give it to you, Beth, and email me or call me and I will go with you.

Beth: That's fantastic. Yeah, and if you all want to talk to Sarah or get a message to her, just drop me an email at Disability411@jinkle.com, and I will be very happy to pass on a message. Just make sure you put in the email "This is for Sarah." I'll pass that on to Sarah, as opposed to giving your personal email out the whole world wide, broadcast here. You guys write me, I'll pass you on to Sarah. Well thank you again, so much, for taking the time for a second interview.

Sarah: I love it.

Beth: Who knows, we may have you again.

Sarah: Thank you.

Beth: We'll be right back.

[music]

OK, that will wrap us up for this week. I do plan to take a few weeks off here over the holidays to spend with my family. It is kind of hard to get people pinned down for interviews over the holidays anyway. So I am going to take a few weeks off. I will be back at some point in January, so make sure you stay subscribed. As always, if you have questions or comments or ideas, please email me at Disability411@jinkle.com, visit our website at Disability411.jinkle.com, where you can listen to past shows, you can read the transcript of this and all of our past shows. And again, thanks to Disability Blogger for helping fund some of those transcripts. You can check out his blog at www.DisabilityBlogger.blogspot.com. So happy holidays to everyone; I will see you after the new year. I am Beth Case with Disability 411.

The Disability 411 podcast is licensed under the Creative Commons Attribution Non-Commercial, No Derivatives License, and is part of the Jinkle.com family. Music by the Brobdingnagian Bards is used with permission. Visit our web site at Disability411.Jinkle.com.