WEBVTT 1 00:00:00.276 --> 00:00:02.943 (upbeat music) 2 00:00:03.952 --> 00:00:06.360 Welcome to "Hadley Presents." 3 00:00:06.360 --> 00:00:11.220 I'm your host, Ricky Yager, inviting you to sit back, relax, 4 00:00:11.220 --> 00:00:14.400 and enjoy a conversation with the experts. 5 00:00:14.400 --> 00:00:17.850 In this episode, we address the topic of shame 6 00:00:17.850 --> 00:00:19.770 as it relates to vision loss. 7 00:00:19.770 --> 00:00:20.790 And joining us 8 00:00:20.790 --> 00:00:23.880 are Hadley's director of community, Marc Arneson, 9 00:00:23.880 --> 00:00:26.640 along with psychologist Ed McDaniel 10 00:00:26.640 --> 00:00:29.070 and social worker Jeff Flodin. 11 00:00:29.070 --> 00:00:30.955 Welcome to the show, everybody. 12 00:00:30.955 --> 00:00:31.950 Hey, Ricky. Thank you. 13 00:00:31.950 --> 00:00:34.020 Wow, we got a full house today. 14 00:00:34.020 --> 00:00:37.230 That's exactly what I like to see. (laughs) 15 00:00:37.230 --> 00:00:39.840 So before we jump into this topic, 16 00:00:39.840 --> 00:00:41.250 and it's an incredible one, 17 00:00:41.250 --> 00:00:44.820 it's actually something that people ask about 18 00:00:44.820 --> 00:00:46.710 from time to time, so I'm delighted 19 00:00:46.710 --> 00:00:49.620 that we're having the chance to really dive into it. 20 00:00:49.620 --> 00:00:52.380 But before we do that, why don't we just get an idea 21 00:00:52.380 --> 00:00:54.420 of who everyone is. 22 00:00:54.420 --> 00:00:55.500 Marc, we'll start with you. 23 00:00:55.500 --> 00:00:57.090 You're no stranger to the program 24 00:00:57.090 --> 00:00:59.430 but just a brief one or two sentences 25 00:00:59.430 --> 00:01:01.350 about who you are and what you do. 26 00:01:01.350 --> 00:01:02.760 Yeah, sure, of course, Ricky. 27 00:01:02.760 --> 00:01:03.720 I'm Marc Arneson. 28 00:01:03.720 --> 00:01:06.780 As you had mentioned, my title is director of community. 29 00:01:06.780 --> 00:01:08.940 What I do is I actually spend a lot of my days 30 00:01:08.940 --> 00:01:11.430 just meeting interesting and fascinating people 31 00:01:11.430 --> 00:01:14.490 and talking about all the things that we do here at Hadley. 32 00:01:14.490 --> 00:01:18.000 So I get to join a lot of low vision support groups 33 00:01:18.000 --> 00:01:20.610 and just share about all the ways that we can help. 34 00:01:20.610 --> 00:01:22.200 Nice, alright. 35 00:01:22.200 --> 00:01:24.840 So, Ed, how about a little bit from you? 36 00:01:24.840 --> 00:01:27.840 Tell us about who you are and what you do. 37 00:01:27.840 --> 00:01:28.680 Sure. 38 00:01:28.680 --> 00:01:32.550 Ed McDaniel, and I've been a psychologist for quite a while. 39 00:01:32.550 --> 00:01:36.690 I retired from the state of North Carolina after 30 years 40 00:01:36.690 --> 00:01:39.720 and worked for a nonprofit for a while. 41 00:01:39.720 --> 00:01:43.020 And more recently, I've been transitioning 42 00:01:43.020 --> 00:01:46.230 to doing more work with people with vision loss. 43 00:01:46.230 --> 00:01:49.520 My previous 30 years was a whole variety 44 00:01:49.520 --> 00:01:51.330 of people with disabilities. 45 00:01:51.330 --> 00:01:52.320 Excellent, thank you, 46 00:01:52.320 --> 00:01:55.290 can't wait to hear your perspective on things. 47 00:01:55.290 --> 00:01:58.800 And, Jeff Flodin, you too are no stranger 48 00:01:58.800 --> 00:02:01.470 to the "Hadley Presents" podcast. 49 00:02:01.470 --> 00:02:03.270 We've had you on once before. 50 00:02:03.270 --> 00:02:05.400 But for those who may not have heard that episode, 51 00:02:05.400 --> 00:02:08.010 give us a bit about who you are and what you do. 52 00:02:08.010 --> 00:02:09.960 Thanks, Ricky, and it's nice to be back. 53 00:02:09.960 --> 00:02:12.060 My name is Jeff Flodin. 54 00:02:12.060 --> 00:02:13.200 I'm a social worker. 55 00:02:13.200 --> 00:02:16.680 I got my MSW when Gerald Ford was president, 56 00:02:16.680 --> 00:02:19.860 if anybody remembers him. 57 00:02:19.860 --> 00:02:21.750 I'm also a writer. 58 00:02:21.750 --> 00:02:22.590 I'm the author 59 00:02:22.590 --> 00:02:27.360 of the Jalapenos in the Oatmeal: Digesting Vision Loss blog, 60 00:02:27.360 --> 00:02:31.620 which deals with how to cope with vision loss. 61 00:02:31.620 --> 00:02:33.360 I try to be humorous, serious, 62 00:02:33.360 --> 00:02:38.360 and practical in alternating blog postings. 63 00:02:38.370 --> 00:02:40.620 I live in Fort Collins, Colorado 64 00:02:40.620 --> 00:02:43.230 but spent most of my time, 65 00:02:43.230 --> 00:02:46.230 including the last 12 years or so, in Chicago, 66 00:02:46.230 --> 00:02:49.020 where I've worked for Friedman Place. 67 00:02:49.020 --> 00:02:50.490 Excellent, thank you for that, 68 00:02:50.490 --> 00:02:53.760 and also looking forward to your perspective. 69 00:02:53.760 --> 00:02:57.840 So it's interesting, you know, "Hadley Presents" 70 00:02:57.840 --> 00:03:00.300 is kind of a grab bag of things, 71 00:03:00.300 --> 00:03:03.210 and we talk about a lot of practical things, 72 00:03:03.210 --> 00:03:06.330 and we talk about technology, cooking, 73 00:03:06.330 --> 00:03:08.220 the sky's the limit, I suppose, 74 00:03:08.220 --> 00:03:11.940 but maybe someone is listening and thinking, 75 00:03:11.940 --> 00:03:16.740 why exactly are we going to talk about shame? 76 00:03:16.740 --> 00:03:20.100 What's the importance of discussing that in vision loss? 77 00:03:20.100 --> 00:03:21.840 Maybe it would help to, 78 00:03:21.840 --> 00:03:24.360 I guess, frame the conversation a little bit 79 00:03:24.360 --> 00:03:28.170 and talk about what the definition of shame is 80 00:03:28.170 --> 00:03:30.840 and see if everybody even agrees on that. 81 00:03:30.840 --> 00:03:33.240 And then once we're on the same page, 82 00:03:33.240 --> 00:03:35.640 we can get to Marc's questions. 83 00:03:35.640 --> 00:03:40.590 So the, I guess, formal definition of shame 84 00:03:40.590 --> 00:03:45.300 is a painful feeling of humiliation or distress 85 00:03:45.300 --> 00:03:47.310 caused by the consciousness 86 00:03:47.310 --> 00:03:51.300 of wrong or foolish behavior. 87 00:03:51.300 --> 00:03:53.520 I don't know if that's exactly what I think of 88 00:03:53.520 --> 00:03:54.930 when I think of shame, 89 00:03:54.930 --> 00:03:58.440 so why don't we just see where everybody is on that. 90 00:03:58.440 --> 00:04:00.480 What do you think about this definition? 91 00:04:00.480 --> 00:04:02.850 Yeah, Ricky, after hearing that definition, 92 00:04:02.850 --> 00:04:05.280 actually, it is really interesting to me, 93 00:04:05.280 --> 00:04:07.023 and it makes me think. 94 00:04:07.023 --> 00:04:09.270 And, Jeff, I don't know if you wanna jump in here, 95 00:04:09.270 --> 00:04:11.160 but I'm curious about your thoughts 96 00:04:11.160 --> 00:04:12.510 of where you think shame comes from 97 00:04:12.510 --> 00:04:15.240 or, you know, what might be the source of shame. 98 00:04:15.240 --> 00:04:16.080 Thanks, Marc. 99 00:04:16.080 --> 00:04:18.153 With regard to the definition, 100 00:04:19.560 --> 00:04:24.030 my understanding of the difference between guilt and shame 101 00:04:24.030 --> 00:04:27.780 is that guilt is a feeling that arises 102 00:04:27.780 --> 00:04:29.970 when you do something wrong. 103 00:04:29.970 --> 00:04:31.680 It's an action. 104 00:04:31.680 --> 00:04:35.040 And shame comes more from a feeling 105 00:04:35.040 --> 00:04:38.700 that who you are, yourself, your core, 106 00:04:38.700 --> 00:04:43.140 is deficient or even worthless. 107 00:04:43.140 --> 00:04:45.120 The difference, I think, 108 00:04:45.120 --> 00:04:48.630 is partially that guilt can be assuaged, 109 00:04:48.630 --> 00:04:51.030 let's say, by asking forgiveness, 110 00:04:51.030 --> 00:04:56.030 or going to confession, or whatever you do in your culture, 111 00:04:56.040 --> 00:05:00.330 whereas shame hits a lot deeper into the core 112 00:05:00.330 --> 00:05:01.530 of the personality. 113 00:05:01.530 --> 00:05:04.470 It's almost like a rejection of self. 114 00:05:04.470 --> 00:05:08.160 And I think there's a lot of different applications of shame 115 00:05:08.160 --> 00:05:12.390 in like psychology, which I'm sure Ed will look at. 116 00:05:12.390 --> 00:05:14.790 But in the vision loss realm, 117 00:05:14.790 --> 00:05:19.790 I think if a person feels shamed by what they perceive 118 00:05:20.190 --> 00:05:24.480 as the deficiency of vision loss, 119 00:05:24.480 --> 00:05:28.590 then hopefully it won't go any further than that. 120 00:05:28.590 --> 00:05:31.740 It'll just be a part of their persona 121 00:05:31.740 --> 00:05:36.690 that they feel deficient or less than. 122 00:05:36.690 --> 00:05:38.190 Yeah, you know, thank you for that, Jeff. 123 00:05:38.190 --> 00:05:39.840 Yeah, that's really helpful. 124 00:05:39.840 --> 00:05:41.970 Ed, do you have anything that you wanted to add 125 00:05:41.970 --> 00:05:43.350 to Jeff's comment? 126 00:05:43.350 --> 00:05:46.320 Yeah, I think Jeff described it very well. 127 00:05:46.320 --> 00:05:49.800 You know, I think in regards to vision loss, 128 00:05:49.800 --> 00:05:53.550 and first of all, you know, just to state that shame 129 00:05:53.550 --> 00:05:57.900 is a very common, normal emotion that we have 130 00:05:57.900 --> 00:06:00.720 for a whole variety of reasons. 131 00:06:00.720 --> 00:06:02.700 But as it relates to vision loss, 132 00:06:02.700 --> 00:06:04.890 I think the source, I would say, 133 00:06:04.890 --> 00:06:08.460 would be that we may feel different, 134 00:06:08.460 --> 00:06:11.130 maybe feel that we don't fit in, 135 00:06:11.130 --> 00:06:15.840 that we're not good enough or as capable as others, 136 00:06:15.840 --> 00:06:19.110 afraid that others will not accept us 137 00:06:19.110 --> 00:06:21.840 or may treat us differently. 138 00:06:21.840 --> 00:06:24.450 So it is, as Jeff described it, 139 00:06:24.450 --> 00:06:27.450 you know, it's how we feel about ourselves 140 00:06:27.450 --> 00:06:32.450 but also our perception of how others may feel about us. 141 00:06:32.880 --> 00:06:33.930 Gotcha, yeah. 142 00:06:33.930 --> 00:06:38.370 And I think too that it's important to point out 143 00:06:38.370 --> 00:06:42.720 that shame is a necessary part 144 00:06:42.720 --> 00:06:44.040 of growing up. 145 00:06:44.040 --> 00:06:46.560 It's important for a child, 146 00:06:46.560 --> 00:06:48.630 when they reach the terrible twos 147 00:06:48.630 --> 00:06:51.690 or when their ego is just boundless, 148 00:06:51.690 --> 00:06:56.690 that the fact that they are not omnipotent is reinforced. 149 00:06:56.760 --> 00:07:01.530 And some of the ways that shame are helpful, 150 00:07:01.530 --> 00:07:03.840 or at least ordinary in growing up, 151 00:07:03.840 --> 00:07:05.820 is the feeling of bashfulness, 152 00:07:05.820 --> 00:07:10.680 which does have maybe a benefit of keeping people 153 00:07:10.680 --> 00:07:15.510 a bit cautious as to their relationships and so on. 154 00:07:15.510 --> 00:07:17.310 And then embarrassment, 155 00:07:17.310 --> 00:07:22.110 which is also kind of a check on somebody's behavior 156 00:07:22.110 --> 00:07:25.920 that says, oh, no, I think I went too far with that. 157 00:07:25.920 --> 00:07:29.700 When it gets toxic, like some people refer to it 158 00:07:29.700 --> 00:07:33.930 as a difference between ordinary shame and toxic shame, 159 00:07:33.930 --> 00:07:37.080 is when it really starts being self-destructive 160 00:07:37.080 --> 00:07:40.593 and hurtful to your perception of yourself. 161 00:07:41.460 --> 00:07:43.530 I'd never heard those differentiations before 162 00:07:43.530 --> 00:07:45.540 between toxic and ordinary shame. 163 00:07:45.540 --> 00:07:46.920 That's so interesting. 164 00:07:46.920 --> 00:07:49.560 I'm curious, I know, you know, both Ed and Jeff, 165 00:07:49.560 --> 00:07:51.360 you know, living with vision loss yourselves, 166 00:07:51.360 --> 00:07:54.060 I'm wondering if you could just share 167 00:07:54.060 --> 00:07:56.460 how feelings of shame may have affected you 168 00:07:56.460 --> 00:07:57.600 in your own lives? 169 00:07:57.600 --> 00:07:59.970 Jeff, I don't know if you wanna go ahead and share first? 170 00:07:59.970 --> 00:08:00.803 Sure. 171 00:08:00.803 --> 00:08:03.000 Well, a bit more background. 172 00:08:03.000 --> 00:08:07.830 I was diagnosed with retinitis pigmentosa, also known as RP, 173 00:08:07.830 --> 00:08:10.230 when I was 35 years old. 174 00:08:10.230 --> 00:08:13.710 I had no background in vision loss. 175 00:08:13.710 --> 00:08:15.690 Even though RP is hereditary, 176 00:08:15.690 --> 00:08:18.210 nobody else in my family had it. 177 00:08:18.210 --> 00:08:22.350 So I was really thunderstruck by that definition 178 00:08:22.350 --> 00:08:25.140 which came totally out of the blue. 179 00:08:25.140 --> 00:08:30.140 And my initial reaction to the diagnosis and the prognosis 180 00:08:30.630 --> 00:08:33.180 that I was exposed to for RP 181 00:08:33.180 --> 00:08:37.380 was to feel that, maybe even beyond shame, 182 00:08:37.380 --> 00:08:39.870 the world was coming to an end. 183 00:08:39.870 --> 00:08:42.600 And I started listing 184 00:08:42.600 --> 00:08:47.600 the roles that I had as a 35-year-old man. 185 00:08:47.730 --> 00:08:52.710 Who would love me in this deficient state? 186 00:08:52.710 --> 00:08:53.970 There were practical things. 187 00:08:53.970 --> 00:08:55.950 How am I going to drive? 188 00:08:55.950 --> 00:08:59.850 How am I going to learn if I can't read print? 189 00:08:59.850 --> 00:09:04.470 How will I keep myself going and energized 190 00:09:04.470 --> 00:09:08.010 when I can't play golf or take photographs? 191 00:09:08.010 --> 00:09:11.700 So there were a lot of roles, like, what I am, 192 00:09:11.700 --> 00:09:15.660 but the shame kind of hit deeper than what I am. 193 00:09:15.660 --> 00:09:19.140 It hit, who am I going to be? 194 00:09:19.140 --> 00:09:20.880 What's gonna be left? 195 00:09:20.880 --> 00:09:22.380 Thank you for the honesty, Jeff. 196 00:09:22.380 --> 00:09:23.213 I appreciate that. 197 00:09:23.213 --> 00:09:25.470 And, Ed, I don't know if you wanna share as well. 198 00:09:25.470 --> 00:09:26.850 You know, maybe the same question, 199 00:09:26.850 --> 00:09:27.960 you know, how feelings of shame 200 00:09:27.960 --> 00:09:30.090 maybe have affected you in your own life? 201 00:09:30.090 --> 00:09:31.170 Sure. 202 00:09:31.170 --> 00:09:34.170 Like Jeff, I also have RP, 203 00:09:34.170 --> 00:09:38.130 but in addition to that, I have hearing loss. 204 00:09:38.130 --> 00:09:42.390 And so what I have is called Usher syndrome type 2A. 205 00:09:42.390 --> 00:09:45.690 So that means I've been hard of hearing since birth. 206 00:09:45.690 --> 00:09:48.090 And as I got older, 207 00:09:48.090 --> 00:09:51.660 the RP started to reveal itself. 208 00:09:51.660 --> 00:09:56.220 And I've been slowly losing my vision most of my life now. 209 00:09:56.220 --> 00:10:01.020 When I was five years old, I started wearing hearing aids. 210 00:10:01.020 --> 00:10:04.920 And around the time I became a teenager, 211 00:10:04.920 --> 00:10:08.550 I can see that I was feeling shame about my hearing loss 212 00:10:08.550 --> 00:10:10.860 because I started to make sure 213 00:10:10.860 --> 00:10:13.590 that my hair covered my hearing aids. 214 00:10:13.590 --> 00:10:16.170 Developmentally, when you enter your teen years, 215 00:10:16.170 --> 00:10:17.820 you are more concerned 216 00:10:17.820 --> 00:10:19.650 about what your peers think about you, 217 00:10:19.650 --> 00:10:23.340 and so that was something that I wanted to hide. 218 00:10:23.340 --> 00:10:26.280 So I think that's common with feeling shame 219 00:10:26.280 --> 00:10:30.090 is that we want to hide what we may see 220 00:10:30.090 --> 00:10:32.430 as a deficit in ourselves. 221 00:10:32.430 --> 00:10:34.890 And so, as a young adult, 222 00:10:34.890 --> 00:10:37.350 I began to come to terms with my hearing loss. 223 00:10:37.350 --> 00:10:38.880 But then at that point, 224 00:10:38.880 --> 00:10:41.970 I was diagnosed with the vision loss. 225 00:10:41.970 --> 00:10:45.067 And so then I started feeling shame about that, 226 00:10:45.067 --> 00:10:48.090 you know, having some of those similar emotions 227 00:10:48.090 --> 00:10:49.650 that Jeff talked about. 228 00:10:49.650 --> 00:10:53.220 And so it was kind of going through that same kind of thing 229 00:10:53.220 --> 00:10:55.020 but for two different reasons. 230 00:10:55.020 --> 00:10:57.480 And I think that in my case, 231 00:10:57.480 --> 00:10:59.430 with progressive vision loss, 232 00:10:59.430 --> 00:11:02.640 as both Ed and I experience, 233 00:11:02.640 --> 00:11:05.010 you can feel that you've adjusted well 234 00:11:05.010 --> 00:11:06.960 to a certain level of eyesight, 235 00:11:06.960 --> 00:11:09.930 and then all of a sudden it diminishes, 236 00:11:09.930 --> 00:11:12.210 and you're almost back at square one 237 00:11:12.210 --> 00:11:15.150 if you're talking about the grief reaction and so on 238 00:11:15.150 --> 00:11:17.250 and denial and all that kicks in. 239 00:11:17.250 --> 00:11:20.610 But in general, I think it's like the shame 240 00:11:20.610 --> 00:11:23.010 starts to kick in at times 241 00:11:23.010 --> 00:11:27.540 when you don't feel adequately equipped. 242 00:11:27.540 --> 00:11:32.190 And it's like too soon to go public with this. 243 00:11:32.190 --> 00:11:34.710 It's too soon to be out there 244 00:11:34.710 --> 00:11:36.930 under the scrutiny of the public. 245 00:11:36.930 --> 00:11:41.160 And those are really the most self-conscious times, 246 00:11:41.160 --> 00:11:44.730 like the first time that you go out in public 247 00:11:44.730 --> 00:11:49.380 after you've had training with a white cane, for example. 248 00:11:49.380 --> 00:11:50.490 No, that's interesting. 249 00:11:50.490 --> 00:11:52.470 And, Jeff, when you talk about that 250 00:11:52.470 --> 00:11:53.730 and, you know, you talked about the roles 251 00:11:53.730 --> 00:11:55.350 that you've played in life as a photographer, 252 00:11:55.350 --> 00:11:57.750 a golfer, things like that, but these moments 253 00:11:57.750 --> 00:11:59.580 when you don't feel adequately equipped, I think, 254 00:11:59.580 --> 00:12:02.670 is what you said, too soon to go out in public with this. 255 00:12:02.670 --> 00:12:05.100 And I'm curious, you know, just your reaction to that 256 00:12:05.100 --> 00:12:07.383 and maybe, you know, in addition to that, 257 00:12:08.280 --> 00:12:11.220 is there times where maybe you felt this idea of shame, 258 00:12:11.220 --> 00:12:13.890 this concept of shame, more strongly throughout your life, 259 00:12:13.890 --> 00:12:15.250 and maybe what do you think 260 00:12:15.250 --> 00:12:17.970 has led to some of those moments? 261 00:12:17.970 --> 00:12:22.530 I think for me, particularly as Jeff mentioned, 262 00:12:22.530 --> 00:12:25.350 starting to use the cane was probably the time 263 00:12:25.350 --> 00:12:27.630 that I felt it the most in my life. 264 00:12:27.630 --> 00:12:30.060 Certainly before that, you know, 265 00:12:30.060 --> 00:12:32.430 I stopped driving when I was 29. 266 00:12:32.430 --> 00:12:35.310 I felt it to some degree at that point, 267 00:12:35.310 --> 00:12:37.380 but with the cane, it was probably the most. 268 00:12:37.380 --> 00:12:42.210 When I got a guide dog last year, I didn't feel that at all. 269 00:12:42.210 --> 00:12:45.750 At that point, you know, I think I had come more to terms 270 00:12:45.750 --> 00:12:47.010 with my vision loss 271 00:12:47.010 --> 00:12:51.090 and I was really excited about having a guide dog, 272 00:12:51.090 --> 00:12:54.270 where I wasn't so excited in the beginning 273 00:12:54.270 --> 00:12:55.320 about getting a cane. 274 00:12:55.320 --> 00:12:58.200 But fortunately, that feeling of shame 275 00:12:58.200 --> 00:12:59.940 when I started using a cane, 276 00:12:59.940 --> 00:13:02.940 was worried about what people would think of me, 277 00:13:02.940 --> 00:13:07.940 was, over time, replaced with a feeling of confidence 278 00:13:08.040 --> 00:13:12.360 about being able to get around safely. 279 00:13:12.360 --> 00:13:14.820 And the shame started to go away, 280 00:13:14.820 --> 00:13:17.010 and it was really replaced 281 00:13:17.010 --> 00:13:21.450 with a feeling of independence and confidence. 282 00:13:21.450 --> 00:13:22.290 Thanks, Ed. 283 00:13:22.290 --> 00:13:24.930 It's like, I had the same experience 284 00:13:24.930 --> 00:13:28.110 in switching from cane to guide dogs. 285 00:13:28.110 --> 00:13:30.630 And I think two factors. 286 00:13:30.630 --> 00:13:33.810 One was I felt more equipped 287 00:13:33.810 --> 00:13:36.660 and I was ready to be in public. 288 00:13:36.660 --> 00:13:40.800 I had come to terms a little bit more with my vision loss 289 00:13:40.800 --> 00:13:44.160 by the time I trained with my first guide dog. 290 00:13:44.160 --> 00:13:46.200 I'm on my third now. 291 00:13:46.200 --> 00:13:48.060 And the other factor too, 292 00:13:48.060 --> 00:13:51.090 and it's kind of selfish, it may be silly, 293 00:13:51.090 --> 00:13:55.470 but I think it does relate to the sensitivity 294 00:13:55.470 --> 00:13:59.130 to the perception of the public of you, 295 00:13:59.130 --> 00:14:02.370 which is kind of like where, in certain respects, 296 00:14:02.370 --> 00:14:06.120 shame comes from, is that dogs are cool. 297 00:14:06.120 --> 00:14:08.940 And I was living in Philadelphia 298 00:14:08.940 --> 00:14:11.460 at the time I switched from the cane to the dog. 299 00:14:11.460 --> 00:14:14.160 I was commuting by the regional rail. 300 00:14:14.160 --> 00:14:18.240 And the difference in the reception that I got every morning 301 00:14:18.240 --> 00:14:21.780 when I would step onto the train was drastic 302 00:14:21.780 --> 00:14:24.150 between the cane and the dog. 303 00:14:24.150 --> 00:14:25.110 With the cane, 304 00:14:25.110 --> 00:14:27.270 people just kind of buried their noses 305 00:14:27.270 --> 00:14:29.700 a little bit deeper into their newspapers. 306 00:14:29.700 --> 00:14:32.700 But with the dog, it was, hey, come on over here. 307 00:14:32.700 --> 00:14:34.230 This is really cool. 308 00:14:34.230 --> 00:14:37.230 So I don't like to admit 309 00:14:37.230 --> 00:14:41.940 that other people's perception of me does matter, 310 00:14:41.940 --> 00:14:46.470 but it's a rare person that doesn't. 311 00:14:46.470 --> 00:14:48.660 It is a rare person indeed. 312 00:14:48.660 --> 00:14:52.230 And just so you know, I never thought dogs were cool 313 00:14:52.230 --> 00:14:53.220 until I got a dog. 314 00:14:53.220 --> 00:14:56.353 Now they are super cool. (laughs) 315 00:14:57.420 --> 00:14:59.670 You know, and I don't know, either Jeff or Ed, 316 00:14:59.670 --> 00:15:01.200 whoever wants to kind of chime in on this, 317 00:15:01.200 --> 00:15:04.230 but as we're talking about these moments 318 00:15:04.230 --> 00:15:06.180 that can possibly lead to shame, 319 00:15:06.180 --> 00:15:08.490 you know, I've often heard folks talk about the idea 320 00:15:08.490 --> 00:15:11.520 of having to ask for help can be really difficult, 321 00:15:11.520 --> 00:15:13.830 especially when you're kind of new to vision loss 322 00:15:13.830 --> 00:15:15.930 and trying to figure all this stuff out. 323 00:15:15.930 --> 00:15:17.700 And, you know, I've heard people even share 324 00:15:17.700 --> 00:15:20.310 that sometimes they feel like they're a burden. 325 00:15:20.310 --> 00:15:23.670 And I'm wondering, have you guys ever experienced 326 00:15:23.670 --> 00:15:25.890 something like this or has asking for help 327 00:15:25.890 --> 00:15:28.800 ever led to feelings of shame for you? 328 00:15:28.800 --> 00:15:31.590 And whoever wants to jump in, Jeff or Ed. 329 00:15:31.590 --> 00:15:33.450 As you said in the beginning, 330 00:15:33.450 --> 00:15:37.380 it was more difficult for me to ask for help 331 00:15:37.380 --> 00:15:40.860 'cause it wasn't something I did a lot of. 332 00:15:40.860 --> 00:15:44.520 So it was a new thing for me to ask for help. 333 00:15:44.520 --> 00:15:47.760 And that took some getting used to, 334 00:15:47.760 --> 00:15:49.710 you know, in how I felt about myself 335 00:15:49.710 --> 00:15:52.680 and how I was concerned about how others felt about me 336 00:15:52.680 --> 00:15:54.660 if I was to ask for help. 337 00:15:54.660 --> 00:15:58.200 You know, even before my vision loss, 338 00:15:58.200 --> 00:16:01.800 I was not someone who really liked to ask for help. 339 00:16:01.800 --> 00:16:05.640 And even now, I will do everything I can 340 00:16:05.640 --> 00:16:06.987 for myself, you know? 341 00:16:06.987 --> 00:16:10.110 And the main thing that I ask help for nowadays 342 00:16:10.110 --> 00:16:12.690 is rides to go places. 343 00:16:12.690 --> 00:16:15.810 But I think still reluctant to ask for help, 344 00:16:15.810 --> 00:16:18.990 particularly from people who I don't know. 345 00:16:18.990 --> 00:16:21.510 It's a lot easier for family and friends 346 00:16:21.510 --> 00:16:24.930 who, you know, I know and trust, and they know me 347 00:16:24.930 --> 00:16:26.850 and what my abilities are. 348 00:16:26.850 --> 00:16:30.240 Yeah, and I think that's a really good question, 349 00:16:30.240 --> 00:16:33.120 a really good topic because I think 350 00:16:33.120 --> 00:16:38.120 that over the 36 years or so that I've lived with RP, 351 00:16:38.130 --> 00:16:40.860 I've struggled at different times 352 00:16:40.860 --> 00:16:45.300 to accept the level of dependence 353 00:16:45.300 --> 00:16:50.130 to which I am able to submit myself. 354 00:16:50.130 --> 00:16:52.650 And there's a pejorative word right there, 355 00:16:52.650 --> 00:16:54.630 submit myself, you know? 356 00:16:54.630 --> 00:16:59.100 And just to go back a bit in terms of what Ed had said, 357 00:16:59.100 --> 00:17:01.980 we are in a culture 358 00:17:01.980 --> 00:17:05.790 that values self-reliance, and independence, 359 00:17:05.790 --> 00:17:08.160 and pull yourself up by your bootstraps, 360 00:17:08.160 --> 00:17:09.570 and just snap out of it, 361 00:17:09.570 --> 00:17:12.090 and all the phrases that go by that. 362 00:17:12.090 --> 00:17:15.060 So it was a leap to ask for help. 363 00:17:15.060 --> 00:17:19.470 And although this may not be fair or totally accurate, 364 00:17:19.470 --> 00:17:23.820 I think in this culture, especially with men, 365 00:17:23.820 --> 00:17:26.850 that big boys don't cry, you know, and so on, 366 00:17:26.850 --> 00:17:29.370 it makes it rather difficult. 367 00:17:29.370 --> 00:17:33.090 And so I think it may be beyond culture, 368 00:17:33.090 --> 00:17:36.360 it may be deeper into our makeup, 369 00:17:36.360 --> 00:17:38.880 but yeah, asking for help is, 370 00:17:38.880 --> 00:17:40.980 depending on how you interpret it, 371 00:17:40.980 --> 00:17:43.200 putting yourself in a one down position. 372 00:17:43.200 --> 00:17:45.900 And one thing that I learned recently was, 373 00:17:45.900 --> 00:17:48.630 there's a term called mitzvah, 374 00:17:48.630 --> 00:17:51.480 M-I-T-Z-V-A-H, I believe. 375 00:17:51.480 --> 00:17:56.480 And it's defined as the, when you grant the opportunity 376 00:17:56.610 --> 00:18:00.900 to another person to be helpful 377 00:18:00.900 --> 00:18:05.553 without feeling inferior or dependent. 378 00:18:06.510 --> 00:18:09.870 And that's kind of put a new slant on things for me 379 00:18:09.870 --> 00:18:12.300 in terms of asking for things. 380 00:18:12.300 --> 00:18:15.243 It's like giving somebody else the opportunity. 381 00:18:16.080 --> 00:18:18.270 That's a really cool way to put it, Jeff, 382 00:18:18.270 --> 00:18:20.010 giving somebody else the opportunity. 383 00:18:20.010 --> 00:18:20.970 But I think you're right. 384 00:18:20.970 --> 00:18:22.055 I agree with you. 385 00:18:22.055 --> 00:18:23.580 I think that there are these cultural norms 386 00:18:23.580 --> 00:18:25.917 that we're meant to, you know, kinda live up to. 387 00:18:25.917 --> 00:18:27.630 And that can be challenging sometimes. 388 00:18:27.630 --> 00:18:30.150 And I also think, you know, our society 389 00:18:30.150 --> 00:18:34.470 is really kind of built for those without disabilities. 390 00:18:34.470 --> 00:18:35.910 And I think maybe 391 00:18:35.910 --> 00:18:37.650 what perhaps you're talking about a little bit 392 00:18:37.650 --> 00:18:39.510 is this idea of, you know, being viewed 393 00:18:39.510 --> 00:18:40.710 as different in our society 394 00:18:40.710 --> 00:18:43.380 can lead to these negative self views 395 00:18:43.380 --> 00:18:45.810 or even, you know, oftentimes feelings of shame. 396 00:18:45.810 --> 00:18:49.110 Do you think that this has changed over time as a society? 397 00:18:49.110 --> 00:18:51.150 And maybe even for you personally, 398 00:18:51.150 --> 00:18:54.510 you know, in your own life, has this changed over time? 399 00:18:54.510 --> 00:18:57.540 Ed, I don't know if you wanna go ahead and share first. 400 00:18:57.540 --> 00:18:58.410 Sure. 401 00:18:58.410 --> 00:19:03.410 I do think, to some extent, society's views have changed. 402 00:19:04.140 --> 00:19:09.090 In my lifetime, I think there's probably more awareness. 403 00:19:09.090 --> 00:19:12.330 And I think some of that comes through media 404 00:19:12.330 --> 00:19:17.330 and, you know, maybe things that we see on TV and movies, 405 00:19:17.430 --> 00:19:21.210 where people maybe have a little more of an awareness 406 00:19:21.210 --> 00:19:22.950 about vision loss. 407 00:19:22.950 --> 00:19:26.070 But on the other hand, I think you can only get 408 00:19:26.070 --> 00:19:28.890 a limited view from that. 409 00:19:28.890 --> 00:19:32.100 I think it's really from repeated exposure 410 00:19:32.100 --> 00:19:37.100 to someone with vision loss or other disability over time 411 00:19:37.290 --> 00:19:39.750 where your views really change. 412 00:19:39.750 --> 00:19:42.990 So I think that, yeah, there have been improvements, 413 00:19:42.990 --> 00:19:44.730 but I think there's more 414 00:19:44.730 --> 00:19:47.430 that we can all learn about differences. 415 00:19:47.430 --> 00:19:48.360 I agree, yeah. 416 00:19:48.360 --> 00:19:49.530 Jeff, how about you? 417 00:19:49.530 --> 00:19:50.790 Has this changed over time? 418 00:19:50.790 --> 00:19:52.500 And maybe even for you personally, 419 00:19:52.500 --> 00:19:54.960 have you seen it change in your own life? 420 00:19:54.960 --> 00:19:56.820 Well, you know, I mentioned earlier 421 00:19:56.820 --> 00:20:01.140 that I enjoyed photography during my sighted era. 422 00:20:01.140 --> 00:20:03.930 And there was a real iconic black and white photograph 423 00:20:03.930 --> 00:20:07.020 of a woman who's probably in a seated position 424 00:20:07.020 --> 00:20:09.480 propped up against a brick wall. 425 00:20:09.480 --> 00:20:14.480 She has obvious visual deficits in terms of, 426 00:20:14.490 --> 00:20:16.920 even cataracts or whatever. 427 00:20:16.920 --> 00:20:19.410 She's rather shabbily dressed. 428 00:20:19.410 --> 00:20:24.410 And she has a sign around her neck from a string 429 00:20:24.630 --> 00:20:26.550 that says blind. 430 00:20:26.550 --> 00:20:30.450 And this was long before I had diagnosis 431 00:20:30.450 --> 00:20:32.310 and any vision loss. 432 00:20:32.310 --> 00:20:36.720 And I was struck by what an iconic photograph that was 433 00:20:36.720 --> 00:20:38.700 and how much that said. 434 00:20:38.700 --> 00:20:42.720 And I think, yes, we live in a sighted society, 435 00:20:42.720 --> 00:20:45.420 and there's no way to get around it. 436 00:20:45.420 --> 00:20:47.310 So, I mean, it's so ingrained. 437 00:20:47.310 --> 00:20:50.190 I had a teenager once 438 00:20:50.190 --> 00:20:54.757 who was just been diagnosed with RP come and say, 439 00:20:54.757 --> 00:20:57.480 "I think I can put up with the eyesight thing, 440 00:20:57.480 --> 00:21:00.840 but right now, is it gonna make me look different?" 441 00:21:00.840 --> 00:21:04.860 There was so much invested in him 442 00:21:04.860 --> 00:21:09.860 with maintaining his identity within the sighted community. 443 00:21:10.350 --> 00:21:12.600 And, you know, I mean, it's obvious 444 00:21:12.600 --> 00:21:15.810 that different perceptions or different reactions 445 00:21:15.810 --> 00:21:17.490 hit at different times. 446 00:21:17.490 --> 00:21:19.920 A teenager is mostly worried 447 00:21:19.920 --> 00:21:21.510 about whether they're gonna fit in 448 00:21:21.510 --> 00:21:23.610 and whether they got the right clothes. 449 00:21:23.610 --> 00:21:27.990 And as Ed said, you know, he could cover his hearing aids 450 00:21:27.990 --> 00:21:30.480 with the length of his hair and stuff like that. 451 00:21:30.480 --> 00:21:33.840 So it really takes a lot of constant vigilance 452 00:21:33.840 --> 00:21:38.840 and bringing attention to people that it's not a negative. 453 00:21:39.150 --> 00:21:42.720 And I imagine that having this knowledge 454 00:21:42.720 --> 00:21:46.830 that most people either consciously 455 00:21:46.830 --> 00:21:51.030 or unconsciously view any change, 456 00:21:51.030 --> 00:21:54.900 any disability, anything, this is a tragedy. 457 00:21:54.900 --> 00:21:59.900 And there are probably, you know, that gets internalized 458 00:22:00.090 --> 00:22:01.770 if you grow up with that. 459 00:22:01.770 --> 00:22:04.530 And if you haven't experienced vision loss before 460 00:22:04.530 --> 00:22:07.230 and suddenly you do, there's still all of these things 461 00:22:07.230 --> 00:22:10.140 that you've absorbed over time 462 00:22:10.140 --> 00:22:12.930 just because it's ingrained 463 00:22:12.930 --> 00:22:15.420 to think of difference 464 00:22:15.420 --> 00:22:20.280 as perhaps tragic, or you're suffering from it, or whatever. 465 00:22:20.280 --> 00:22:23.310 So I imagine that brings about 466 00:22:23.310 --> 00:22:26.700 all sorts of feelings of shame. 467 00:22:26.700 --> 00:22:29.670 And I just appreciate that both of you 468 00:22:29.670 --> 00:22:34.290 have been willing to talk about times in your lives 469 00:22:34.290 --> 00:22:36.480 when you've felt that, 470 00:22:36.480 --> 00:22:41.100 things that made you look at yourself and think, 471 00:22:41.100 --> 00:22:44.850 I feel like I'd rather hide this for a bit, 472 00:22:44.850 --> 00:22:48.630 and then suddenly, you know, I'm ready to make this public. 473 00:22:48.630 --> 00:22:51.360 So I guess as we wrap up 474 00:22:51.360 --> 00:22:56.010 having talked about ways that we feel shame 475 00:22:56.010 --> 00:22:58.800 in situations that bring that about, 476 00:22:58.800 --> 00:23:02.850 are there some things that have helped each of you 477 00:23:02.850 --> 00:23:05.550 to get past that 478 00:23:05.550 --> 00:23:08.820 and not have those feelings anymore, 479 00:23:08.820 --> 00:23:12.300 to just come to accept whatever this thing is 480 00:23:12.300 --> 00:23:14.700 that made you feel shame initially? 481 00:23:14.700 --> 00:23:16.410 Ed, let's start with you. 482 00:23:16.410 --> 00:23:17.339 Okay. 483 00:23:17.339 --> 00:23:20.760 You know, I would say that emotions that we have, 484 00:23:20.760 --> 00:23:24.180 while we would like to think that we have control over them, 485 00:23:24.180 --> 00:23:27.690 we really have very limited control over our emotions. 486 00:23:27.690 --> 00:23:31.890 But what we can control a lot of times is our behaviors 487 00:23:31.890 --> 00:23:34.860 and even act with those emotions. 488 00:23:34.860 --> 00:23:39.860 So, for example, with shame and any other negative emotion, 489 00:23:40.080 --> 00:23:43.080 you know, our tendency is want to avoid that feeling 490 00:23:43.080 --> 00:23:44.160 and get rid of it. 491 00:23:44.160 --> 00:23:47.490 But maybe a better approach is to, 492 00:23:47.490 --> 00:23:51.360 you know, notice that feeling that we're having, 493 00:23:51.360 --> 00:23:54.810 acknowledge it, and sit with it for a while. 494 00:23:54.810 --> 00:23:57.360 You know, what we really, a lot of times, wanna do 495 00:23:57.360 --> 00:23:59.880 is avoid that feeling and get away from it. 496 00:23:59.880 --> 00:24:01.470 But a lot of times, 497 00:24:01.470 --> 00:24:04.530 even though that might provide immediate relief, 498 00:24:04.530 --> 00:24:09.330 when we ignore our pain, oftentimes it will last longer. 499 00:24:09.330 --> 00:24:14.010 So if we can kind of sit with our discomfort for a while, 500 00:24:14.010 --> 00:24:15.990 and sometimes I would even say, 501 00:24:15.990 --> 00:24:19.530 you know, I probably wallowed in some of my emotions 502 00:24:19.530 --> 00:24:22.050 as I was dealing with vision loss for a while, 503 00:24:22.050 --> 00:24:25.680 but that allowed me to experience those emotions 504 00:24:25.680 --> 00:24:26.790 without pushing 'em away. 505 00:24:26.790 --> 00:24:29.550 And that helped me to move forward. 506 00:24:29.550 --> 00:24:31.530 And, you know, some of the ways that you can do that 507 00:24:31.530 --> 00:24:36.390 is by opening up and talking about how you feel. 508 00:24:36.390 --> 00:24:37.950 And, you know, if that's difficult, 509 00:24:37.950 --> 00:24:42.480 maybe writing about how you feel about what's going on. 510 00:24:42.480 --> 00:24:46.410 And just recognizing that even with those feelings, 511 00:24:46.410 --> 00:24:49.740 you can move in the direction that you want to. 512 00:24:49.740 --> 00:24:51.270 For example, with the cane, 513 00:24:51.270 --> 00:24:55.170 I was feeling shameful about having to start using a cane, 514 00:24:55.170 --> 00:24:59.610 but I knew that I wanted to maintain my independence. 515 00:24:59.610 --> 00:25:01.020 And that was important to me 516 00:25:01.020 --> 00:25:02.760 so I moved in that direction 517 00:25:02.760 --> 00:25:05.280 even though, in the beginning particularly, 518 00:25:05.280 --> 00:25:07.410 I still felt that shame. 519 00:25:07.410 --> 00:25:09.480 The other thing I would say is when you're doing this, 520 00:25:09.480 --> 00:25:11.730 to take small steps. 521 00:25:11.730 --> 00:25:13.440 Have compassion for yourself 522 00:25:13.440 --> 00:25:16.290 because it's not gonna be a straight line 523 00:25:16.290 --> 00:25:19.110 from point A to point B, that it's gonna take time. 524 00:25:19.110 --> 00:25:21.360 You know, this is something I've dealt with 525 00:25:21.360 --> 00:25:22.500 for many, many years 526 00:25:22.500 --> 00:25:24.900 and continue to deal with to some extent. 527 00:25:24.900 --> 00:25:26.880 And, you know, really focusing 528 00:25:26.880 --> 00:25:30.540 on what I can do today here and now 529 00:25:30.540 --> 00:25:33.930 and not worrying about the way things used to be 530 00:25:33.930 --> 00:25:37.980 or worrying about what might happen in the future. 531 00:25:37.980 --> 00:25:38.813 Thank you, Ed. 532 00:25:38.813 --> 00:25:41.340 I really endorse and appreciate 533 00:25:41.340 --> 00:25:43.950 all the different facets that you've covered. 534 00:25:43.950 --> 00:25:48.540 I only have to add that shame is internalized. 535 00:25:48.540 --> 00:25:53.370 And there are some internal processes that can be helpful 536 00:25:53.370 --> 00:25:56.160 in terms of working on acceptance 537 00:25:56.160 --> 00:25:59.430 and unconditional positive regard for yourself. 538 00:25:59.430 --> 00:26:00.960 Give yourself a break. 539 00:26:00.960 --> 00:26:03.030 You know, you're doing the best you can. 540 00:26:03.030 --> 00:26:06.570 And it's like shame fosters 541 00:26:06.570 --> 00:26:10.050 and flourishes in darkness. 542 00:26:10.050 --> 00:26:13.350 And a couple of things externally, 543 00:26:13.350 --> 00:26:16.860 it's important to keep up with your skills, 544 00:26:16.860 --> 00:26:20.730 because that way, when you do reach the point 545 00:26:20.730 --> 00:26:22.860 where you have to go out in public 546 00:26:22.860 --> 00:26:25.830 or go under the scrutiny of people, 547 00:26:25.830 --> 00:26:29.610 you feel more competent, you feel better about yourself. 548 00:26:29.610 --> 00:26:32.610 And the other thing that's been helpful for me 549 00:26:32.610 --> 00:26:37.080 is to find people who are going through the same thing 550 00:26:37.080 --> 00:26:40.200 and can understand and empathize. 551 00:26:40.200 --> 00:26:42.810 And I think the biggest thing for me 552 00:26:42.810 --> 00:26:46.140 was to realize that maybe the best way 553 00:26:46.140 --> 00:26:49.380 that I can cope with my vision loss 554 00:26:49.380 --> 00:26:52.620 is to try, through whatever means, 555 00:26:52.620 --> 00:26:55.980 to help others who are going through the same process. 556 00:26:55.980 --> 00:26:56.813 Thank you. 557 00:26:56.813 --> 00:26:58.170 Very well said, both of you. 558 00:26:58.170 --> 00:27:01.230 And again, I just wanna say how much I appreciate 559 00:27:01.230 --> 00:27:04.380 your willingness to come and talk about this stuff, 560 00:27:04.380 --> 00:27:07.680 because it is a moment of vulnerability, 561 00:27:07.680 --> 00:27:10.860 that it can be hard to be comfortable with. 562 00:27:10.860 --> 00:27:14.910 It's easy to talk about things that make you happy, 563 00:27:14.910 --> 00:27:17.820 it's probably less so to talk about things 564 00:27:17.820 --> 00:27:21.330 that make you feel discomfort 565 00:27:21.330 --> 00:27:23.640 in whatever shape that takes. 566 00:27:23.640 --> 00:27:27.300 So again, thank you for agreeing to come 567 00:27:27.300 --> 00:27:30.030 and join us and talk about that. 568 00:27:30.030 --> 00:27:33.030 Any final thoughts before we wrap up? 569 00:27:33.030 --> 00:27:34.713 Well, Rick, I just wanna say thanks again to 570 00:27:34.713 --> 00:27:35.550 Ed and Jeff. 571 00:27:35.550 --> 00:27:38.398 You guys, I really appreciate the time, 572 00:27:38.398 --> 00:27:39.300 you know, spent on such a, 573 00:27:39.300 --> 00:27:41.490 I think it's a really important conversation, 574 00:27:41.490 --> 00:27:43.860 and just appreciate, you know, a start 575 00:27:43.860 --> 00:27:45.480 to a really important conversation today. 576 00:27:45.480 --> 00:27:46.320 Thank you. 577 00:27:46.320 --> 00:27:49.770 Well, and I wanna thank you too, and Ed and Hadley 578 00:27:49.770 --> 00:27:52.440 for giving us the opportunity 579 00:27:52.440 --> 00:27:55.680 to bring this out in the open a bit. 580 00:27:55.680 --> 00:27:57.990 And I would just say I, you know, have enjoyed 581 00:27:57.990 --> 00:28:00.990 discussing this and appreciate the opportunity. 582 00:28:00.990 --> 00:28:02.370 Thank you all so much. 583 00:28:02.370 --> 00:28:03.913 And thank you for listening. 584 00:28:03.913 --> 00:28:05.010 (lighthearted music) 585 00:28:05.010 --> 00:28:06.510 Got something to say? 586 00:28:06.510 --> 00:28:09.630 Share your thoughts about this episode of "Hadley Presents" 587 00:28:09.630 --> 00:28:12.180 or make suggestions for future episodes. 588 00:28:12.180 --> 00:28:13.830 We'd love to hear from you. 589 00:28:13.830 --> 00:28:18.090 Send us an email at podcast@hadley.edu. 590 00:28:18.090 --> 00:28:23.090 That's P-O-D-C-A-S-T@hadley.edu. 591 00:28:23.400 --> 00:28:24.900 Or leave us a message 592 00:28:24.900 --> 00:28:29.760 at 847-784-2870. 593 00:28:29.760 --> 00:28:30.903 Thanks for listening.