Is Hemophilia a Secret? Disclosure in a World Filled with Technology
Whether within friendships, romantic relationships, at school or in the workplace, an adult with hemophilia will confront the question of disclosing their bleeding disorder status many times over. Join us on May 24th to learn techniques that will help you negotiate this process in the age of digital and social media.
Transcription of "Is Hemophilia a Secret? Disclosure in a World Filled with Technology"
KELLEY POLLARD (Moderator): Good evening, everyone, and welcome to Is Hemophilia a Secret? Disclosure in a World Filled with Technology, part of the National Hemophilia Foundation’s Hemophilia Webinar series. This new series is supported by an educational grant from Novo Nordisk.
Our presenter this evening is Javey Dallas. He is a clinical social worker with the Oklahoma Center for Bleeding and Clotting disorders in Oklahoma City. Javey has presented at various educational conferences nationally, including most recently at NHF’s Inhibitor Education Summits. Welcome, Javey.
JAVEY DALLAS: Thank you very much, Kelley.
KELLEY POLLARD: You’re welcome. Our program will conclude with a question and answer segment. To ask a question, go to the area in the far left of your webinar screen and type your question in the field just to the left of the Send button, which is located in the pod or area labeled Chat. Click the Send button when you have finished typing your question. However, please note that your question will be addressed during the question and answer session—actually, we’re taking them throughout. So, you can type them in at any time and Javey will be addressing them as they do come in today.
There are no handouts for this presentation, however, a recording of this webinar will be available shortly on the National Hemophilia Foundation website at www.hemophilia.org.
And now I would like to turn things over to Javey.
JAVEY DALLAS: Thank you very much, Kelley. I would like to thank everyone, first and foremost, for taking time out of their busy schedules for this webinar. I know that life gets hectic, and so I know sometimes just carving that little bit of time out even to learn can be difficult. I want to thank the National Hemophilia Foundation for having this webinar series, and also thank Novo Nordisk.
To kick things off, I would like to introduce myself. As Kelley said, my name is Javey Dallas. I’m a social worker at the Oklahoma Center for Bleeding and Clotting Disorders. I’ve been there approximately four years. I’ve been a presenter with the National Hemophilia Foundation for approximately three years presenting on topics such as disclosure, 504 and school issues, advocacy and other things like that. As we go through the webinar series, this is a little bit different than how I’m used to presenting, and I’m sure probably a little bit different than you’re used to receiving this information, but I do want this to be as interactive as possible. One of the things that I always say to my audience is that I don’t consider myself to be an expert in the field, though I’ve been in the field for a while. I consider you all to be the experts in this in that in part you live with this every day. So, any questions that you have, any input that you have, go ahead and type that in to the Chat function. Kelley has been invited go ahead and read those as they come in.
When I speak about the bleeding disorder community, the image that I really like to paint is that of a literal community or of a neighborhood. We’ve got quite a few people on the call tonight, and I’m sure that there will be others who will join us as the night progresses.
The people who are on tonight, the people in your treatment centers, the people that we see at the conferences that we go to, that we’ve attended camps with, those are the people that I like to think of as our neighbors. Part of the reason that I love this image is because, like most of our neighbors, we probably don’t interact with them every day. But like any good neighbor, if we need anything, but I’ve seen that the bleeding disorder community time and again has always been there to support each other.
Now, there are a couple of things that I hope to be able to pull out. The first thing is first to be able to talk about the dynamics and the ramifications of being able to disclose hemophilia in a variety of circumstances and situations. The second is being able to explain the potential pros and the cons associated with sharing information in the digital age.
One of the challenges in dealing with disclosure is that it’s different for everybody who deals with a bleeding disorder. For some people they are little affected by their bleeds and by their pain and they may not think much of it while most of us know other people who are sidelined for days and for weeks at a time managing their bleeds, managing their pain, so for them it may be a little bit more difficult to not deal with the issue of disclosure.
There are a few different areas that I want to touch on as we talk about this issue of disclosure. The first is work. When we talk about employment, there are really two primary laws that provide protection. The first is Title II of the Americans with Disabilities Act. The second is the Family Medical Leave Act, commonly known as FMLA.
One may ask the question, “Does this apply to me?” When we talk about the Americans with Disabilities Act, it really comes down to three questions, and you really have to meet the qualifications for all three in order to be protected. The first question that you have to ask yourself is, “Do you have a disability, but otherwise qualify for the job?” If that’s the case, then we can move on to the next question, which is, “Is there a physical or mental impairment that substantially limits a major life activity?” Then the third is, “Do you have a record of or have a history of having a substantial impairment?” That’s substantial as opposed to minor impairment. So, if you meet these three qualifications, then you are afforded protections of the Americans with Disabilities Act.
As we go through these slides, I know that there may be questions regarding specific situations. We may not necessarily be able to get to all of those situations in the question and answer period, but one of the things that I strongly believe in—there is a saying that says, “If you give a man a fish, he eats for a day, but if you teach him how to fish, he eats forever.” And so, to that end, I really want to not only be able to talk about this and answer specific questions for you all tonight, but I also want to be able to provide the information for you all so that you’re able to apply this to specific situations and share this information with your community, wherever it is that you live, and with the end people that you interact with.
I think it’s important in part because if you don’t know what your rights are, it’s easy for someone to take them away from you. But then the second piece is it allows you to be able to not only disclose, as we talk about this issue of disclosure, but it also allows you to begin to advocate or to speak up for what your rights are and the things that you need. So, we may not get to all of the questions, but I do encourage you, as we go through this, to take notes on the Americans with Disabilities Act and to take notes on FMLA in case you run into difficulties to see if there are protections that you might be able to get through these laws.
We talked about the three qualifications to be afforded protection under the Americans with Disabilities Act. One of the things that the Americans with Disabilities Act provides is what is known as reasonable accommodations. Some of these accommodations may include providing or modifying equipment or devices for you to be able to do the job successfully. One of the other things may be job restructuring. Part of that may be changing the layout of the job—moving where the office is such that someone with a disability with reasonable changes can have access to that job. It may also include adjusting or modifying examination or training materials or policies, or making the workplace really accessible to and usable by people with disabilities. Part of this is to be able to provide equal access to employment for those people who are otherwise qualified for those jobs so that access to the job itself isn’t a reason for discrimination against someone with a disability.
One of the other important things that is clearly stated in the Americans with Disabilities Act is that an employer may not ask under any circumstances if you are disabled, but they are able to ask if you can perform the job with or without reasonable accommodation.
One of the questions that is often asked, as I’ve traveled, is, “Are you required to disclose in the interview, during the application process or as you’re applying for insurance that you have a disability?” And the answer to that also is, “No. You’re not required to disclose.” But one of the things that I do point out is that if you don’t disclose your disability, then you are not entitled to the protections that disclosure provides.
The other law that I mentioned is the Family Medical Leave Act of 1993. This applies to any employer who employs 50 or more people within a 100-mile radius of your local work site. It provides certain employees up to twelve work weeks of unpaid job-protected leave each year. It requires group health benefits to be continued during the leave as if the employee continued to work there instead of taking the leave.
The other thing that many employers also allow is if there is paid time off or sick leave. Instead of being unpaid it would allow you to draw off of the leave that you have banked up.
One of the questions that I will continue to mention tonight is to share or not to share. That being the question—thinking about the pros and the cons. I don’t think that there is a one-size-fits-all for that, but as we go through each of the slides, as we think about the laws, as I bring up different topics to think about, getting each one of you to think about that and how it applies to your own relationships with your employer or your own relationships with your loved ones, your relationships with your friends and the people that you hang out with. As we talk about the pros, one of the pros as we talk about employment is that in disclosing or being able to talk about the disability that you have, number one, it affords you protection.
The second thing, and I will say this with each one of the modules, is that in disclosing it allows you to have a conversation with other people who may not have encountered anyone with a bleeding disorder. I think that as we think about the encounters that we have had historically with other people that there are a lot of misconceptions out there related to hemophilia and related to von Willebrand and related to other bleeding disorders. And so I think by disclosing, it allows us to have a conversation and shed light and share the knowledge that we have about how we’ve been able to manage the bleeding disorders that we do manage, or the disabilities that we manage.
Now, the cons may be—I know for some people they’re afraid of the stigmas that are attached to them, that for some people the knowledge may not be enough, that they may be afraid of the discrimination that comes with disclosing to an employer in terms of being treated differently or being passed over for raises or promotions. But going back to the importance of knowing the laws is that the law does protect you if you have a disability. It protects you when it comes to promotion. It protects you when it comes to raises. It protects you when it comes to employment practices and training. And so by having the information related to the Americans with Disabilities Act, by having information related to the Family Medical Leave Act, it allows you to not only disclose, but I think the flipside of disclosure is advocacy. It allows you to advocate for your rights. It allows you to advocate for your needs. And it allows you to advocate for other people who will come into that situation and to be able to share knowledge as well.
Let’s take some time and see if there are any questions before we move on out of the work segment of disclosure. Does anyone have any questions about disclosing to an employer?
KELLEY POLLARD: Okay. I’ll give them a reminder on how they can ask questions. You can go down to the Chat Pod located in the lower left corner of your screen and type and send your question. Also, if you would like to ask a question live and you’re on the telephone, you can do so by pressing star 1 on your telephone key pad. I will announce each caller prior to bringing you into the conference. And please remember if you have your phone on mute, take it off mute when you are selected to ask your question. All right. It looks like we do have a question that has come in from Danielle. She wants to know about existing condition in regards to insurance.
JAVEY DALLAS: Hi, Danielle. I think that that’s a great question. For a lot of people who deal with disabilities as it relates to disclosure, that’s really one of the big questions they have is how it relates to disclosing a preexisting condition and the protections that are afforded for preexisting conditions in the ACA, also known as Obamacare. It prevents insurers from discriminating or charging more to anyone who has a preexisting condition. And it also does not allow them to discriminate or to deny coverage to anyone with a preexisting condition. Danielle, if you will, type in yes or no and let me know if that answers your question.
Okay. So, Danielle said, “Correct, but what about the ACHA we just passed in the House?” Good. So, we’re paying attention to the news. Like I said, the first piece I think is disclosure. The second side I think was advocacy. So, the ACHA has passed in the House—as it stands right now it looks like the Senate will probably do some rewrite. That’s one of those things that unfortunately I would have to say is up in the air. The other piece of that is I encourage everyone to call their local congressman. I tell people every day, “I can’t tell you which way to vote, but every one of us has a voice and it’s important that we use the voice that we have, because whether we voted for our representative or not, they represent all of us and not only a portion of us.” It hasn’t passed the Senate yet. Right now we don’t know what it may look like in its final version.
KELLEY POLLARD: All right. We have another question that has come in. That question is from Edgar. He would like to know, “What happens if it is disclosed after you are hired?”
JAVEY DALLAS: As it applies to after we’re hired, once again, we’re still protected. There are two primary laws that protect us, number one being the Americans with Disabilities Act and the second being FMLA if we meet the criteria as the laws apply. So, one can’t be discriminated against as it relates to any sort of promotion or advancement, being paid more and those sorts of things. So, there is no discrimination that an employer can do even after one is hired. If an employer happens to move into a new building, if you’ve already disclosed, then the Americans with Disabilities Act still provides you the protection that they have to make sure that the place is accessible to you.
There are quite a few different ways that reasonable accommodations can be applied after we’re hired. Sometimes one has to get into the specifics of, “What is the need that one has, and what is the barrier in order to be able to meet that need in a reasonable way?”
KELLEY POLLARD: The next question is from Sara. “If you are open about disclosing your bleeding disorder, how early in the job interview process is it okay to reveal this information?” It looks like we’ve lost Javey. One moment. I’m sure he’s probably dialing back in. Ladies and gentlemen, just bear with us for one moment while we get him back.
JAVEY DALLAS: Kelley?
KELLEY POLLARD: Oh, there you are. Welcome back.
JAVEY DALLAS: Thank you. Is everyone else there?
KELLEY POLLARD: We are. Yes.
JAVEY DALLAS: Okay. So, Sara’s question was if you’re open about disclosing your bleeding disorder, how early in the job process is it okay to reveal this information, or how early is too early. Sara, I don’t know that there is necessarily a right or a wrong answer. One of the things that I stated, and I will probably continue to state, is I think that every situation is a little bit different in part because everyone has a different level of comfort with their bleeding disorder, and so the information that they have about it and that they’re able to share about it with other people may be a little bit different. I think also that there are some jobs and some job structures where there are very rigid circumstances, and so one may not feel as comfortable disclosing that information. And then sometimes we get into interviews that there is a vibe about who we get into the situation with. There may be a level of comfort that’s there that creates such that we feel able to share more than we would have necessarily shared with a different interviewer even if it’s the same corporation.
Does that answer your question, Sara?
KELLEY POLLARD: Yes. She said, “Thank you.” It looks like we have no further questions, so I’ll turn it back to you.
JAVEY DALLAS: Okay. The next portion that I want to talk about is romance. And I also put more than friends, because I realize that generationally there is this divide that seems to exist between dating and, as the next generation calls it, Netflix and chill. So, I think some people may not consider themselves to be in a romantic position, and so may not necessarily feel like this applies to them, but I do want people to think about, even if they’re in this Netflix and chill—this just-hanging-out situation—if things do become intimate just thinking about the outcomes and consequences associated with that.
To that end, there is a saying that I have, which is on the screen, that says, “No man is an island, entire unto himself; but all of us are ever many—a piece of the continent.” And whether we like it or not, at some point we’ll have to wrestle with whether with love and how we share the information that’s close to us as it relates to disclosure.
So, in thinking about this romance or this friendship or a little bit more friends, the first thing that I like people to think about are qualities that you want in what we consider to be a healthy relationship. I don’t think that there is such a thing as a perfect relationship, or going back to the image that I was painting earlier of community, I don’t think that there is a perfect one of those, but I do think it’s important that, as we think about the qualities that create healthy relationships, what is it that you want, and what it is that you’re willing to give?
So, I’ve jotted a couple of them down. I think that one of the first things that most people would say is that they want respect. They want to be respected about who they are. For those people who are dealing with disabilities and bleeding disorders, being able to be respected for both our strengths and our weaknesses, I think most of us would like to have some sort of honest relationship. As we enter into romance, more than friends or however we want to couch that situation, most of us want some level of acceptance just for us to be able to be who we are. “I don’t have to be anything more. I don’t have to be anything less. I want to be more than I am today, but knowing that the person that I’m looking at accepts me for who I am—all my baggage and everything that I come with.”
I think most of us would want trust. We want to be able to trust the person that we’re with. I don’t think that there is anyone who would say that they want someone that they just cannot trust. I think all of us know somebody in relationships like that, whether we like it or not, but we wouldn’t necessarily consider that to be a healthy relationship.
And then the other one I think is what I consider mutual aid or helping one another. There is a song that I talk about at some of the seminars that I go to: the song Lean on Me. It talks about the fact that at some point all of us are going to need somebody to lean on. And if we’re in a healthy relationship, that’s one of the things that we’re going to want.
Now, as we think about how to share and when to share, I think some of the questions are going to be the same, whether we’re talking about work, whether we’re talking about romance, whether we’re talking about online or interacting with people on the internet. But I think that there is an intimacy that’s there when we talk about romance in part because we open ourselves up in ways to be exposed, to be heard or to be encouraged in romantic relationships.
I want to go ahead and open this up again to questions on things that you wrestle with. We’ve got approximately twenty people on the line. Generally there are a variety of ages that are represented. Generally there are a variety of viewpoints that are represented. So, I think that this in part allows each one of us to share, to impart knowledge to get other people to think about and to grow the community. So, go ahead and throw your questions out there. Throw your thoughts out there. How do you wrestle with the question of when to date? If you would rather your name not be said as it relates to this question, start out with that in all bold letters and we’ll keep your name secret, but I do want to encourage you all to share your thoughts. If you stayed on the phone this long, you’ve been interested or provoked by something that’s on here.
So, go ahead and throw out whatever questions that you have. Like I said, if you don’t want your name said, put it in all capital letters. How do you wrestle with the question of how to disclose to someone else or when to disclose to someone else? I guess another question would be do you disclose to someone if you’re not interested in them in a romantic way yet, but you’re just dating them—just someone that you’re seeing.
KELLEY POLLARD: Okay. Just a reminder to the audience, you can go to the Chat Pod and type in your question in the bottom and then hit send. Also you can ask a question live if you’re on the telephone by pressing star 1. Michelle made a comment in regards to the last topic. For the workforce she said that she would not disclose anything ahead of time. I don’t know if that includes romance or not.
JAVEY DALLAS: Michelle typed that in when we were talking about the workplace. That was around the time that I got cut off from the phone, so I do apologize, Michelle. Thank you for your comment. Just piggybacking off of Michelle’s comment, while hopefully people are typing in, I do know that there are lots of people who do choose not to disclose. I was at a conference this past weekend, and there was a gentleman who said that in all of his years of working at his job—I think he said he had been there fifteen years—that he has never disclosed. He has been able to manage the minor bleeds that he has, and the major ones fortunately have happened either while he was on the weekend or on vacation. I know there are many people who never choose to disclose to their employer, just like Michelle stated.
KELLEY POLLARD: The next question is, “Is there such a thing as disclosing too early in a relationship?”
JAVEY DALLAS: I think part of that can be—I underline the words can be—too personal. I think probably the only absolute way that would be too early is if one introduced themselves in such a way that it was like, “Hi, my name is Javey Dallas and I’ve got hemophilia.” Then it’s like that might be too much information. But there are probably a lot of other things that we could couch right there as it relates to things that people tell us too early in a relationship. But I think part of it is knowledge. I think part of it continues to be knowledge in how we’re able to have that conversation about a bleeding disorder. But I think there are some people who may never be able to appropriately have that conversation. I say that on the receiving end; not as someone who has the bleeding disorder, but that there are some people who are never mature enough to deal with someone who has a bleeding disorder. And so it doesn’t matter whether we’re talking six weeks into the relationship or six years into the relationship and dealing with that. They may never be able to handle it or mature enough to manage that relationship.
KELLEY POLLARD: All right. Next on, “I have always been open with all of my relationships living with my bleeding disorders. I have found that it has made it easier when bleeding episodes happen. Everyone has an idea or a plan of what they can do to help me.”
JAVEY DALLAS: And I really do think that that’s a great comment, because, as I was talking about encouraging you all to wrestle with this question of disclosure, and the flipside being advocacy, there are lots of people that we hang out with—our friends and buddies—and just getting those with bleeding disorders to think about what happens in the worst case scenario. And so I do think if one is comfortable with their bleeding disorder that it does allow there to be able to plan—“In the event I have a bleed, this is exactly what needs to happen. This is where my medicine is. This is my hematologist.” And being able to appropriately relay the information that’s necessary.
KELLEY POLLARD: The next comment that we have: she says that her husband has VWD.
JAVEY DALLAS: Which his von Willebrand’s disease.
KELLEY POLLARD: Okay. “But it wasn’t diagnosed until after our children were five years old. We just didn’t know much about the family history of VWD, so we hadn’t been through this situation yet. We have twin girls who are twelve, and they’ve been very open about their VWD with their friends. I hope that as they move into a more romantic stage they will continue to be open enough about it. So, this acceptance is part of their relationship from the beginning.”
JAVEY DALLAS: I’ll speak to the first part first in terms of one getting older and finding out that there is some sort of family history of the bleeding disorder. I think we live in a day and age where each one of us is able to be more open about the situations in which we live. And so finding out perhaps that some of the issues that we live with may have some sort of genetic component to it I think allows us to have intergenerational conversations, which is the second part of what the commenter said in terms of being able to have conversations with her daughters, and then also her daughters being able to share that information with their friends. I think in part it helps to dispel a lot of the myths that people had about bleeding disorders for so long that created a lot of the barriers themselves.
Now, as it relates to the romantic relationships, I certainly agree with you and I hope that your daughters continue to feel comfortable with their bleeding disorders. If they’re not involved in the local chapter and things like that, I think that those things continue to instill confidence in them, because in part they’re around other people who are able to manage those bleeding disorders and transition into successful romantic relationships and successful employment opportunities and the other things that come with that.
KELLEY POLLARD: The next comment is: “In terms of disclosure, something interesting, I have a bleeding disorder actually opposite of hemophilia; a clotting disorder. And even working for a hemophilia organization, I feel they do not understand. For example, when my blood gets too thin from my blood thinners and I can’t go to work. Interesting since I actually work for a hemophilia organization.”
JAVEY DALLAS: Interesting I think is one word that we can use for it. One of the things that I would encourage you to do, and I think that this kind of goes back to some of what I have continued to talk about, is using the word advocacy. Advocating doesn’t always have to be loud, but continuing to have conversations. They say it’s the squeaky wheel that gets the grease. So, continue to educate yourself about your bleeding disorder, and the more information that you have, the more information that you’re able to share with others and to shed light. Even though sometimes we think we know what we know, we may not actually hold the truth. So, I think that that allows you an opportunity in part to provoke the community to think about the other side of that. So, I would continue to encourage you to speak up about your bleeding disorder just like I encourage everyone else to. That’s regardless of where it is that we work.
KELLEY POLLARD: The next comment: “I don’t think it has the same stigma as 30 years ago. People are more open.”
JAVEY DALLAS: The commenter is very right about that. I think in part that we’re able to better manage. We know more about medicine now than we did 30 years ago. We know more about the blood itself and the body itself than we did 30 years ago. And when I say we, I don’t mean necessarily just the bleeding disorder community, but I think as a nation and as the world there is just the body of knowledge that has continued to grow over the years, which is one of the reasons that I continue to promote the importance of education. I think that applies on all levels so that we can continue to dispel stereotypes so we can continue to knock down walls and the barriers that exist.
KELLEY POLLARD: It looks like we have no further comments or questions. So, I will turn it back to you, Javey.
JAVEY DALLAS: The next thing that I want to talk about is the internet. A lot of the ways that we connect and disclose are in part the same as you will see when we move on. But the truth is, like it or not, we live in a society where it’s really impossible for us not to interact with the internet on our daily lives. For younger people the internet and computers have been almost a part of our lives as much as our hands and our feet. With computers and phones in all our homes it seems like it’s inescapable. The internet does offer new frontiers for us. It allows us to create and to recreate ourselves time and again. It allows us to discover and to be discovered. But, like all new territories, all the dangers have yet to be fully thought out or predicted.
As we talk about the internet, there are a few main platforms that I really want you to think about. I think that in these main platforms there is a lot of information that’s fed from those. The first is Facebook, of course. The second is Twitter and the third is Instagram/Snapchat. I have these bulleted out in terms of disclosure. We talked a lot about, “In work do I tell my employer that I have a bleeding disorder, or do I not tell them?” As it relates to romance, “Do I tell this person that I’m attempting to get to know, or do I not tell them that I’m managing a bleeding disorder?” But when it comes to online, one of the things that I found is this is the place where most people have given away control without even necessarily thinking about giving away control.
You may ask the question, “How have I done that?” But if you get on Facebook and you’re looking at someone’s profile, how do you tell the things that they’re interested in? In part we tell by the groups that they follow, by the likes that they have given. We follow by the hashtags. The same for Twitter, the same for Instagram, the same for Snapchat, which is why I have each one of those couched up there. And so even though we haven’t made a conscious choice to disclose that we have an association or that we’re managing a bleeding disorder because of the mentions, because of the groups, because of the likes or the follows and the hashtags we have inadvertently given people that information. And that’s not necessarily a bad thing, but I do encourage people to think about the consequences or the outcomes when their employer or their teacher or that romantic interest makes the choice to search for you through social media. So, even though you have not consciously had that conversation with them, you’ve unconsciously still provided information to them that you may not necessarily have been ready for them to have.
It was thrown out that being on social media is a conscious choice itself, and you’re correct about that. But there are lots of things that people do through social media that they may not necessarily want all of their groups to know about. And so as we talk about the pros and cons of disclosure, getting people to think about not necessarily whether to get on social media or not, but getting them to think about—and we’ll talk about this a little bit further in the next segment—techniques for how to appropriately disclose the bleeding disorder that they’re dealing with, or whatever information it is that they’ve decided to post.
Michelle started out the question and answer period. We’ll come to this question of to share or not to share. We talked about it as it relates to employers. We talked about it as it relates to romantic relationships. As it relates to social media, do you all choose to engage in conversations or groups or follows related to your bleeding disorder, or is it something that you keep totally off of line? Because I find in part younger people seem not to engage related to their bleeding disorders online as much as parents and grandparents advocating for walks, for their chapters and for national events.
So, as young people, how do you wrestle with that question of not necessarily whether we get online or not, but what information we choose to share and to whom we share it with?
KELLEY POLLARD: Danielle says, “No. Absolutely not. It’s off line. I keep all social media generic or family related. I do not reveal any personal information about myself or my family.”
JAVEY DALLAS: Okay. One of the things that I do encourage parents to think about as it relates to the social media and disclosure is posting your children, that once we put the information on there, it’s impossible for it to be totally erased. Some parents choose to disclose their child’s bleeding disorder that the child may not necessarily want at a future point for everyone to know about. That’s just a point for thought.
KELLEY POLLARD: Sara has added, “Uh-oh.” As a parent she has been sharing a lot on Facebook, and now she’s worried that this will come back to haunt her kids.
JAVEY DALLAS: I apologize, Sara. I hadn’t read your comment before I made that comment. It’s really just something that I find—I have worked in a hemophilia treatment center, I go to camps with kids and I have had the opportunity to go across the country and talk with parents and with teenagers. That has really been one of the conversations that I’ve heard a lot. I don’t think that there is necessarily a right or a wrong answer. I think it’s just food for thought for parents, for siblings, for individuals who are managing their bleeding disorders—just something to think about in terms of—not necessarily whether we do it, but how we do it and how we can do those things in a safe way.
Sara has forgiven me, for everyone who may wonder.
KELLEY POLLARD: I have a comment: “For that parent you can always pull things off line—always. It may still be out there, but you can clean up your account. That may prevent employers or new people from seeing your personal information.
JAVEY DALLAS: You’re right about that part. You can clean accounts up and things like that. Most employers aren’t going to take the time to do a deep search. A lot of this is just kind of food for thought. But I think that there really are safe ways of disclosing to an employer. I think there are safe ways of disclosing to romantic partners. I think that there are safe ways of being able to share and to disclose online. I think that there are safe ways to be able to engage in groups. We’re able to have this webinar. There are lots of other webinar series that are sponsored by and through NHF that allows those who are in the bleeding disorder community to provide advocacy, to provide information, support and knowledge. And so I think that there are ways that one can do that in a safe manner.
KELLEY POLLARD: Next comment: “What I found is it helps to connect with other members of a bleeding disorder group so when I am facing a challenge that I have never faced I have a quick support group to lean on. This has been a great support network and I have met many lifelong friends at NHF’s national meetings or Facebook groups.”
JAVEY DALLAS: He is very right about that. I think he illuminates one of the reasons that I like to use the word community or neighborhood as I talk about the bleeding disorder community, which is the support that is there, whether we are long distance or whether we are local. If you haven’t had opportunities to attend NHF events or chapter events, I certainly encourage you to do so. It provides great resources and great support for those people who may be needing it. One of the things with bleeding disorders is that there generally aren’t very many people who live around us who are managing the same disability that we are, and so I think it’s important that we know where we can get the support that we need when we need it.
KELLEY POLLARD: Samantha agrees. She said, “There is great support out there.”
JAVEY DALLAS: And so that really does move us into the last section, which is what are some techniques for navigating disclosure. The first is educating yourself. The first thing to educate yourself about is your bleeding disorder. It’s difficult to have a conversation with someone else about the things we’re managing if it’s hard for us to have that conversation with them, or if we don’t have the information that we can share in a way that we understand it to be able to give it to them in a way that they can understand it also. So, the first thing that I encourage people to do is educate yourself about your bleeding disorder.
The next thing is to educate yourself about your rights. When you know what your rights are, it allows you to draw lines in the sand regarding the protections that you’re afforded and being able to stand up and to demand those protections in an appropriate way.
The next thing is with every right comes a responsibility. So, know what your responsibilities are. What are the things that are required from you not only from the Americans with Disabilities Act or FMLA? But one of the things it requires is that you are qualified for the job. And so making sure that you live up to each responsibility so that you can continue to be given the protection that you need.
Another technique that I think is important for navigating disclosures is checking your security settings online as we were talking about Facebook, Snapchat, Twitter and Instagram. One of the things that I continue to say is I’m not anti-social media or any of those things, but I think that being able to just really be aware of the information that we share. Most of those do provide some level of security in terms of being able to direct certain information to certain groups and allowing certain people access to certain information. So, make sure that you check your security settings. Check security settings of your children, if you have children, to make sure that you’re comfortable with the information that they’re sharing as well.
One of the most important things is connect with others. We talked about this in the last section—connect with others at chapter events. Go to national events. If you haven’t been to National Hemophilia foundation events, get involved there. There are online groups. They’re not necessarily all bad, but make sure that you get good information and make sure that you check your security settings.
One of the things about online groups get you to think about is you don’t necessarily know who it is that’s on the other end. It allows you to create yourself and recreate yourself. I don’t know how many emails I’ve gotten from my uncle in Nigeria who promises me a lot of money if I would just give him a little bit of money. But my mom keeps telling me that that’s not my uncle, so I don’t send him any money. You don’t know who’s on the other end of that email or that online group as well. That’s really just one of the things to think about as it relates to the online groups.
And lastly is advocate. Advocate for your cause. Advocate for your child. Advocate for your community. As we get the information, it’s important that we share this information. One of the things that I share many times across the country is we shouldn’t be bothered by or fearful of those who are ignorant of bleeding disorders. We, who know, have a responsibility to educate those who don’t know. Then the world will be wiser.
So, there is a question. Kelley, do you want to start at Danielle’s comment at 19:50?
KELLEY POLLARD: Sure. No problem. Danielle says, “Social media groups can be a great way to share information and connect with others. I’m not anti-social media. It’s a fabulous tool. I think groups are safer than just posting to personal accounts.”
JAVEY DALLAS: One hundred percent agree. And I think a lot of it is getting you to think about the information that we share and what are safe ways of being able to share that information.
KELLEY POLLARD: Our next comment is from Ashley. “Tips, tools and advice on how parents can help explain their child’s bleeding disorder to them in a way that is understandable and doesn’t induce fear? And at what age is it appropriate for them to become their own self-advocates?”
JAVEY DALLAS: I think that that’s a great question. As I work with kids—I have done counseling as well—I try to think about at an age-appropriate level of what are things that the kids are used to. So, when I talk with younger kids and we talk about bleeding disorders, one of the ways that I describe that is in terms of stickers. What child doesn’t love stickers? I frame it in such a way that when we talk about blood clots, for someone who is not managing a bleeding disorder, their blood clots appropriately, so they have the sticky on the back of the sticker. So, those people who are managing bleeding disorders have kind of lost some of the sticky on their sticker and so it’s hard for the sticker to stick just like it’s hard for a clot to stick when trying to form a blood clot. As children get older, they’re able to handle information a little bit differently and in a more mature way.
I think the most important thing, as a parent explains the bleeding disorder to a young person, is I find that kids are a little bit more resilient and they understand a little bit more than we may give them credit for at times. If the parent isn’t freaking out about talking about the bleeding disorder, I find that generally the child is able to have a conversation about the bleeding disorder and ask questions.
I think a great tool is to get in touch with your local hemophilia treatment center when they go in for their next comprehensive clinic visit and allow them to talk to the nurse about their bleeding disorder, factor and some of the tools that are used. I think it allows them to become comfortable with their bleeding disorder. It doesn’t induce the fear, because it provides knowledge. I think that many times we’re fearful of the things that we don’t understand, so by providing that understanding we can hopefully be able to manage some of the fears.
KELLEY POLLARD: Thank you. So, ladies and gentlemen, we only have a couple more minutes left. If you would like to submit a question, now is the time. Submit your questions in the Chat Pod in the lower left corner, or if you’re on the phone you can press star 1 on your telephone keypad. Here we go. Samantha: “Is there an ADA hotline you might recommend?”
JAVEY DALLAS: If you will Google the words disability protections at work, one of the first sites that come up is DOL.gov. DOL stands for the Department of Labor. The Department of Labor provides the information related to the Americans with Disabilities Act. It would provide the information directly related to law itself. That gives you the information that you need to be able to advocate. There is not a national ADA hotline. I would recommend that you get in touch with your local EEOC, which is the Equal Employment Opportunities Commission. They are the local advocates for the Americans with Disabilities Act.
KELLEY POLLARD: That was our last question. I would like to thank you, Javey. Ladies and gentlemen, your feedback is critical to us not only in evaluating this presentation, but in planning of future webinars. Please complete this five-minute survey appearing on your screen now by clicking on the link. We would like to thank you all for attending. This will conclude our program. Have a good evening.
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