1 00:00:00,000 --> 00:00:02,204 Welcome to the Manos Unidas television program. 2 00:00:02,204 --> 00:00:06,388 I am Sol Vázquez-Otero and I will be your host today. 3 00:00:06,428 --> 00:00:18,730 The purpose of this program is to talk about people with disabilities. What are their challenges? How are families impacted? What stigma do they face? 4 Finally, we'll explore how can the Manos Unidas Center work to break barriers and reach out to people with disabilities and their families. 5 00:00:29,452 --> 00:00:42,061 As I mentioned earlier, my name is Sol Vázquez-Otero. I am a Mental Health Advocate for the Disability Rights Network of Pennsylvania. 6 00:00:42,061 --> 00:00:44,184 To my left is... 7 00:00:44,184 --> 00:00:55,373 Good afternoon. I am Rosemary Aviles. I am a native of Guayama, Puerto Rico, a Financial Caseworker for Healthy York Network in Adams County and mother to a child with disabilities. 8 00:00:55,373 --> 00:01:03,190 I am Yeimi Galiardi and I hail from Colombia. I work as a Health Educator for Wellspan Health in Adams County. 9 00:01:03,190 --> 00:01:05,438 And, here to my right is... 10 00:01:05,438 --> 00:01:15,476 I am Adriana Martin of Mexican heritage. I sit on the Board of Directors for Manos Unidas and the Program Development sub-committee. 11 00:01:15,476 --> 00:01:19,449 I am also one of the founders of the "Tocando Puertas" group. 12 00:01:19,449 --> 00:01:30,310 Hi! My name is Nate Rivera I also work for the Disability Rights Network of Pennsylvania in the area of Mental Health. 13 00:01:30,310 --> 00:01:35,869 Thank you, Nate. Nate will co-host this program. 14 00:01:35,869 --> 00:01:44,642 Will you briefly state what your experience has been in caring for a loved one who has a disability? Adriana? 15 00:01:44,642 --> 00:01:54,567 On the one hand, it has been one of the most difficult things I've ever experienced. 16 00:01:54,567 --> 00:01:58,910 On the other hand, it has also been one of the most gratifying. 17 00:01:58,945 --> 00:02:08,987 This is so because each day is filled with challenges to overcome and triumphs to celebrate. 18 00:02:08,987 --> 00:02:24,344 Rosemary? Well, I can certainly say that it was quite a frustrating time when my son was not eligible for services because he was considered to be "borderline." 19 00:02:24,344 --> 00:02:33,808 Yeimi? In contrast to what the others have said --at least from the perspective of the healthcare provider-- it has been a challenge... 20 00:02:33,808 --> 00:02:37,395 because we don't always know where to begin with respect to offering services. 21 00:02:37,395 --> 00:02:47,933 But, it has been very positive to meet families, worthy of admiration, who work tirelessly and with dedication to help their relatives. 22 00:02:47,933 --> 00:02:55,820 What problems or challenges have you encountered regarding finding services for persons with disabilities here in Adams County? 23 00:02:55,820 --> 00:03:08,167 There is a lack of information as to where to find services and, in particular, individualized services. 24 00:03:08,167 --> 00:03:15,270 You see, each person is different and should not be grouped together and treated in the same way. 25 00:03:15,270 --> 00:03:21,437 Another barrier could be language. 26 00:03:21,437 --> 00:03:30,619 Literature and other important materials in languages other than English should be made more readily accessible for the families who have a family member with a disability. 27 00:03:30,619 --> 00:03:34,258 Yes. I have encountered various obstacles. 28 00:03:34,258 --> 00:03:42,926 One being the time that each agency takes to coordinate services with other agencies or the lack of coordination between the agencies. 29 00:03:42,926 --> 00:03:51,911 There is also the lack of funding, lack of programs and the lack of dedicated personnel. 30 00:03:51,911 --> 00:03:57,624 In addition to the difficulties encountered due to the language barrier, I believe that... 31 00:03:57,625 --> 00:04:06,709 there is a need to educate the community about who is a person with a disability and what is the best way to help them. 32 00:04:06,709 --> 00:04:10,760 This holds true for both the community, in general, as well as for healthcare providers. 33 00:04:10,760 --> 00:04:16,374 Individuals may have all the best intentions, but really have no clue as to where to begin to navigate the system, in general... 34 00:04:16,375 --> 00:04:20,561 and even more so for individuals with disabilities. 35 00:04:20,562 --> 00:04:30,189 Another question, have you received any help and how satisfied are you with the help you received? 36 00:04:30,189 --> 00:04:49,331 I have received services from various service providers. Some of us have worked together because we need to work as a team, both the family and the healthcare provider. 37 00:04:49,331 --> 00:05:09,688 Yet, there have been others whose services have been lacking because --as our friend stated earlier-- any small issue can result in a child, or a person with a disability, not qualifying for a service. 38 00:05:09,688 --> 00:05:25,153 It has also been my experience that some providers take little care with familiarizing themselves with a patient's file in order to really determine the problem the person has. 39 00:05:25,153 --> 00:05:32,725 Well, I can say that regarding the agencies that I've dealt with, I have received a substantial amount of emotional support. 40 00:05:32,725 --> 00:05:39,811 They have been by my side in some really difficult and trying moments. Moments where I just didn't know what to do. 41 00:05:39,811 --> 00:05:48,803 There are individuals within these agencies who have a true vocation. They want to and do work for the people. 42 00:05:48,803 --> 00:05:58,984 And, I can truly say, that the support I received from these individuals, was the best support that I could have received. 43 00:05:58,984 --> 00:06:17,041 Two agencies come to mind right now who provide services to which we have been able to connect people. One of these deals with Mental Health and Mental Retardation also known as MH/MR. 44 00:06:17,041 --> 00:06:31,768 The other is connecting families with interpreting services while they are within medical facilities or other community agencies so that they can begin the process. 45 00:06:31,768 --> 00:06:52,540 As we can see, although there are hurdles and challenges to face, nonetheless, you have found personnel who have helped you overcome those hurdles and problems. 46 00:06:52,540 --> 00:06:55,739 It seems that not everything is a loss! 47 00:06:55,739 --> 00:07:05,838 I imagine that what is most important is the effort that each of you have put forth in obtaining services for your children. 48 00:07:05,838 --> 00:07:17,022 Changing the subject a bit, let's talk about stigmas and pejorative words that are used when speaking about people with disabilities. 49 00:07:17,022 --> 00:07:22,487 There is a movement within the United States that speaks of "People First." 50 00:07:22,487 --> 00:07:30,179 This refers to recognizing the individual as a person first and the disability as separate from him or her. 51 00:07:30,179 --> 00:07:34,358 We represent three different nationalities. 52 00:07:34,358 --> 00:07:42,098 You are from Mexico, you are from Colombia, you from Puerto Rico. Nate and I are both of Puerto Rican heritage. 53 00:07:42,098 --> 00:07:55,660 What are some of the words that you may have heard being used in your country? Sometimes we speak these ourselves without even realizing that we do. 54 00:07:55,660 --> 00:08:09,941 In Colombia I've heard people say, "mongol", "loco", "caído del zarzo", "el manco." 55 00:08:09,941 --> 00:08:16,063 There's another word... actually, it's more of a phrase, that refers to people who limp as "patecumbia". 56 00:08:16,063 --> 00:08:21,378 Those are words everyday people use. 57 00:08:21,378 --> 00:08:27,349 In Puerto Rico, for example, people would say, "el cojo." "El cojo" mmhmm. Yes. 58 00:08:27,349 --> 00:08:43,491 Well, there is "el mantiático", "el desquiciado" o "el tostao" depending on the person's ability. In Puerto Rico, people try to use silly words to describe certain characteristics. 59 00:08:43,491 --> 00:08:52,604 Unfortunately, in Puerto Rico, that seems to be true, especially when in terms of describing certain illnesses. 60 00:08:52,604 --> 00:09:14,985 And, in Mexico? Well, in Mexico -as in Colombia- some words are used such as: "el tuco", "el cojo", "el bizco". To describe certain physical disabilities, we use "el bizco", "el chueco", "el tórtolo", "el menso". 61 00:09:14,985 --> 00:09:25,460 There's also, "tonto" referring to those who are slow to react. 62 00:09:25,460 --> 00:09:39,433 But, these words are more closely associated with a specific popular television character that also has a disability. 63 00:09:39,433 --> 00:09:49,521 The media makes use of certain terminology to single out and mock persons with a disability. 64 00:09:49,521 --> 00:10:00,675 Nate, we both sat in the office to compile what was supposed to be a short list of words used in name-calling. Yup! We ended up with just about 100 words! 65 00:10:00,675 --> 00:10:10,070 A word that is used frequently on TV and in the everyday vernacular is the word "retardado". ¡Ah! He is "retardado". 66 00:10:10,070 --> 00:10:18,301 And, to almost anything that does not seem quite right, it is said to be "retardado." 67 00:10:18,301 --> 00:10:30,454 This word seems to have permeated everything and too often with pejorative undertones in order to mock someone. 68 00:10:30,454 --> 00:10:35,495 As Sol mentioned, we came up with a list of nearly 100 words. 69 00:10:35,495 --> 00:10:45,282 And, these are just words that Puerto Ricans use to mock and hurt other people. 70 00:10:45,282 --> 00:10:59,044 It is very common to use these words jokingly to make ourselves feel at ease about a situation without regard to how others feel hurt by these same words. 71 00:10:59,044 --> 00:11:09,792 True. For example, in Puerto Rico I remember watching the Jerry Lewis show -a show to help "crippled" children of the United States. 72 00:11:09,792 --> 00:11:19,723 "Crippled" is a word that takes away part of the children's spirit. 73 00:11:19,723 --> 00:11:34,681 What are we saying when the word "invalid" is used? In-valid. We are saying that the person has no value. That this person is not worth anything. 74 00:11:34,681 --> 00:11:48,502 Unfortunately, we have become so accustomed to using so many words that we don't even realize that first, we are actually using these words... 75 00:11:48,502 --> 00:11:58,741 and second, we haven't taken enough care to learn to use more respectful words to identify an individual. 76 00:11:58,741 --> 00:12:02,538 Because, really that is what is most important. We are talking about people. 77 00:12:02,538 --> 00:12:11,168 We need to be careful to not have the illness take the place of the person we see before us. 78 00:12:11,168 --> 00:12:18,092 Some of these words are used mostly among family members and in social settings. 79 00:12:18,092 --> 00:12:26,388 Many times we use these words to make light of the situation that the child is in. 80 00:12:26,388 --> 00:12:34,051 Supposing the child is slow and is trying something for the first time, we might say, "well, he's a little slow, but isn't it marvelous that she's trying?" 81 00:12:34,051 --> 00:12:39,756 We behave this way because we are really trying to view the situation as ordinary as we can. 82 00:12:39,756 --> 00:12:45,385 And, we don't really think about how we would feel if the situation were reversed. 83 00:12:45,385 --> 00:12:56,056 A person with a disability suffers the misuse of his or her predicament. 84 00:12:56,056 --> 00:12:59,708 We hurt them and we don't even notice that we do. 85 00:12:59,708 --> 00:13:04,886 You see, each day they strive to reach their own goals. 86 00:13:04,886 --> 00:13:19,170 They try to overcome their hurdles, and they suffer on the inside, and many times because of their disability they are unable to express how they struggle and what they feel. 87 00:13:19,170 --> 00:13:24,392 On top of that, here we come, to belittle them. 88 00:13:24,392 --> 00:13:32,103 We chuckle, not thinking of the message he or she tries to convey. For example, a person with a stutter... 89 00:13:32,103 --> 00:13:46,044 some people laugh and even imitate them in their presence without as much as a thought as to how difficult it was for the person to utter a single word without stuttering. 90 00:13:46,044 --> 00:14:02,763 Adriana, I like your answer because I would like to touch upon the impact that the stigma that comes with these words have upon people with disabilities and their families. 91 00:14:02,763 --> 00:14:12,637 I think, with respect to the children and even teenagers who are trying to be part of a group, to make friends, 92 00:14:12,637 --> 00:14:20,709 if the adults surrounding them don't put a stop to the mocking, they grow up thinking it is normal 93 00:14:20,709 --> 00:14:31,412 to make fun of individuals who have some sort of disability and this behavior goes unchanged throughout their life. 94 00:14:31,412 --> 00:14:42,028 Of course, this affects the person's self-esteem and their desire to even want to overcome their struggles or reach their personal goals. 95 00:14:42,028 --> 00:14:47,432 I believe that this affects their mental health. 96 00:14:47,432 --> 00:14:56,432 I agree. Like Adriana and Yeimi have stated, these children, these individuals with a disability, 97 00:14:56,432 --> 00:15:01,047 they feel rejected by their family, acquaintenances and the community as a whole 98 00:15:01,047 --> 00:15:13,547 and they don't improve themselves but become isolated, and instead of making progress in the things they are doing, they lose ground. 99 00:15:13,547 --> 00:15:25,618 Yes. As you said, the impact is that individuals isolate themselves to the point that families excuse them by saying, "Oh, he's just shy." 100 00:15:25,618 --> 00:15:37,862 That's their way of avoiding the issue, which sadly, is a harsh and common reality within our communities. 101 00:15:37,862 --> 00:15:43,839 There is nothing wrong with saying, "I am a person with a disability." 102 00:15:43,839 --> 00:15:53,192 "I have a mental illness and I see a therapist once a week or once a month." 103 00:15:53,192 --> 00:16:00,490 It's okay to say, "I am a mother of a child with a learning disability." 104 00:16:00,490 --> 00:16:08,387 There's nothing wrong with it so long as we keep in mind that we are talking about our loved ones. 105 00:16:08,387 --> 00:16:11,746 And... we owe them our respect and allow them their dignity. 106 00:16:11,746 --> 00:16:18,115 The most common illness these children suffer is depression. 107 00:16:18,115 --> 00:16:37,241 Severe depression due to low self-esteem from watching other people's reaction to them. Depression in children is something we really need to keep an eye out for 108 00:16:37,241 --> 00:16:39,740 because it is quite prevalent within this group. 109 00:16:39,740 --> 00:16:55,246 These words can almost be viewed as a stabbing to the child or their family. You never know who among you has a disability. 110 00:16:55,246 --> 00:16:59,994 Adriana, you are a volunteer worker at Manos Unidas. 111 00:16:59,994 --> 00:17:06,456 And, Manos Unidas has started a new program. What is the name of the program and what is its goal. 112 00:17:06,456 --> 00:17:32,275 The name of the program is "Tocando Puertas." Its purpose is to educate families to help them identify a family member who may have a disability and to learn to accept a person as a person, even if they have a disability. 113 00:17:32,275 --> 00:17:44,283 We also serve as a support group for those whom, like our friend Rosemary mentioned earlier, are facing an emotional crisis in their daily struggles... 114 00:17:44,283 --> 00:18:03,821 and need a safe place to express themselves freely. Here they can also find a variety of options, agencies and services available to them. 115 00:18:03,821 --> 00:18:08,512 Yeimi, Rosemary... You both are also founders of this group. 116 00:18:08,512 --> 00:18:12,125 Tell me about the good things this group has to offer. 117 00:18:12,125 --> 00:18:25,420 I believe it's the stripping away of the stigma associated with people with disabilities, advocating for their rights and educating families as well as healthcare providers... 118 00:18:25,420 --> 00:18:33,586 about what the specific needs of the families of people with disabilities are within the Latino community. 119 00:18:33,586 --> 00:18:44,189 I believe that families feel "at home" when we gather to talk freely about the issues we have regarding our children. 120 00:18:44,189 --> 00:18:52,145 They walk away strengthened by these talks to be able to face their daily struggle. 121 00:18:52,145 --> 00:19:16,069 From what I understand, it is hoped that a group of teenagers will also be established so they can also gather to speak freely about their struggles that oftentimes differ greatly from that of adult issues... 122 00:19:16,069 --> 00:19:20,772 and, even more so than the issues that their parents deal with. 123 00:19:20,772 --> 00:19:33,133 You should call Manos Unidas at the number that appears on screen for more information about the next "Tocando Puertas" meeting. 124 00:19:39,342 --> 00:19:48,465 I can be contacted at Manos Unidas at 717-334-1498. 125 00:19:48,465 --> 00:20:01,923 I would like to emphasize that each individual family and their case is treated under strict confidentiality. 126 00:20:01,923 --> 00:20:13,631 So, please, feel free to join us and speak freely with us without fear of having the information shared outside the group. 127 00:20:13,631 --> 00:20:27,266 From what I understand, that is the overall rule within this group --keeping confidentiality and respecting other's privacy is of utmost importance. 128 00:20:27,266 --> 00:20:33,163 Nate, you were to make mention of the resources available around here? 129 00:20:33,163 --> 00:20:57,064 Yes. MH/MR is the agency that deals with mental health and mental retardation issues in Adams County. They can be reached at 717-632-9238. 130 00:20:57,064 --> 00:21:10,341 Manos Unidas, of course, is another valuable community resource and again, they can be reached at 717-334-1498. 131 00:21:10,341 --> 00:21:26,892 There is also the Disability Rights Network, where Sol and I work. Our number is 1-800-692-7443 extension 400. 132 00:21:26,892 --> 00:21:32,884 The voice you hear on voicemail will be in English, but feel free to leave a message in Spanish and we will return your call. 133 00:21:32,884 --> 00:21:50,434 I truly appreciate the participation of my guest panel today and their willingness to share intimate and, I'm sure, painful details with us. 134 00:21:50,434 --> 00:21:57,050 I'm happy that you want to share and help others in our community. 135 00:21:57,050 --> 00:22:07,899 It is my hope that our viewers take advantage of the opportunities that Manos Unidas is offering to learn more about the rights of people with disabilities. 136 00:22:07,899 --> 00:22:15,258 To learn more about their desires and help them find their rightful place in our community.