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  1. #1

    Just venting a little.

    I am probably over reacting, but I just wanted to vent a little bit. Last Tuesday I attended the wake of my brother. I was in the receiving line, the fourth one in line. As people started coming to pay their last respects, I noticed something that I haven't experienced in the entire thirty years since my injury. I don't know if anyone would agree, but I would have to call it discrimination. Many of the people in attendance were friends of my other siblings. Some were teachers. Some were people who work in the medical field and some were from various other working backgrounds. Anyway as the people were working their way down the receiving line, I would say that at least 1/3 of the people walked right past me on to my sister, who was the next person in line after me. There was no eye contact or acknowledgement shown to me in any way. At one time I counted as many as six people who just walked right on by. Many of them hugged my brother in line before me, then hugged my sister in line after me and totally ignored me in the process. At one point I nudged my sister, who started telling some of the people that I was a sister too, to which they would turn around and offer me their condolences. I really don't understand how there could have been any confusion about that. I was in the middle of the line. I felt at times like I was invisible. My family said that I should think of my brother who had just passed and to let it go. So that is what I did.

    The following day at the burial there were chairs placed in a line for all of the next of kin to sit in. My wheelchair was placed at the end of that row. After the service was over the preacher walked down the line to shake everyone's hand and offer his condolences. When he got to the end of the line where I was, he turned around without saying anything to me. Again my sister stopped him and told him that I was his sister too. Then he turned around and offered me his hand, quickly.

    I can't explain to you how alone I felt in those moments. It was just a horrible, horrible feeling on top of having to deal with the sudden loss of my brother. I loved him too and will miss him too. Don't people get that? I don't understand how or why people could just walk by me like that. I keep thinking, even if there were ramps and accessible bathrooms in every building in America, it means nothing if people continue to have the mindset that we are not all to be treated equally as human beings.

  2. #2
    So sorry you have this horrible experience on top of your brother's death. An excellent example of how most people with disabilities are completely invisible to the general AB population. It goes along with people's personal denial that they are also vulnerable to acquiring a disability, and the "shame of disability" that is pervasive in our culture. Thank your sister for speaking up for you. Next time, stick your hand out and be more assertive for yourself. You will get startled looks, but probably feel better about the situation and that you woke up a few people.

    (KLD)

  3. #3
    That's awful, Sugarcube. I agree with KLD, so many AB people just can't "go there" - even to acknowledge someone who is grieving. What a heartbreaking thing for you to have to go through, as if the circumstances weren't hard enough already.
    MS with cervical and thoracic cord lesions

  4. #4
    Senior Member lynnifer's Avatar
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    That is quite awful. At my mother's funeral, I was put in the middle of the row of kin - in the closed off area where family sits at the funeral. My dad was on one side and David was on my other for moral support. It was the first time I heard my father cry and my sister on the other side and myself reached out and held his arms on each side and he stopped. David had my hand during most of it. He was so good to me at that rough time - I'll give him that.

    It was almost jovial at the receiving line during the wake, I saw many I hadn't seen in years and we caught up with so many.

    I can't imagine anyone over looking me at any of my family's deaths. That is quite awful! I'd write a letter to the editor about how it made you feel - eff how the family tells you to 'get over it.' Family never understands.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  5. #5
    Sorry, also agree with KLD. One of my fave docs told me about it upfront and has reminded me over the years. He was so helpful. -ket

  6. #6
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    My sincerest condolences for your loss and I am extremely sorry to hear of your experience. That is AWFUL. It saddens me to hear others are having issues...I had a recent experience similar to yours, though not through the loss of someone; this occurred during a birthday celebration:

    I live about an hour away from my sister and only niece with whom I am very close. Before I became disabled, I was a primary caretaker to her. We have maintained our close connection. She often comes to visit for a few days and we relish that time together. We also chat on Face Time regularly. She just turned eight.

    Anyway, when I go out I usually use my power chair, because I don't have the strength or stability to get around other than short distances in my manual chair. However, since I cannot drive due to a seizure disorder, I need to arrange special transport. My insurance pays for rides to appointments and I can use the bus for short distances, but there isn't public transport to take me to my sister's place. I cannot afford the specialized transport, but my parents offered to pay one way if my sister could pick me up. I was grateful for the help, though I knew this meant I was in for a rough day in my manual chair. I knew I'd need help a lot; I hate asking for help...

    My brother-in-law's sister was coming in from out of state, so we decided to surprise my niece and not tell her I was coming too. It worked and she was super excited to see me. Great. Then later her other aunt arrived and that's when stuff started...we had to leave quickly once they got back from the airport. It takes me a good 10-15minutes in the bathroom, but I was told we had 5minutes to get ready. I rushed and as a result, my muscles were shaky on our way out. The other auntie kept giving me looks when I asked for help from my niece (She's used to it and doesn't mind.), my sister or my brother-in-law. I had to be carried to the car by my brother-in-law and he put me in the middle of the backseat, knowing my trunk muscles are weak and I need support as well as help being buckled in. Instead of offering help, he just left me and got in the front to chat with his sister. They were complaining to each other about being late, when my sister came out and saw me slumped in the seat. We didn't want a big fight, so she searched around for the middle belt under my bottom, which she eventually found, then we got on our way.

    I had to go to the toilet again before we even got there. It's hard for me to hold it, but I didn't want to complain. So, I waited. My brother-in-law dropped me hard in my chair from the car and took off. I nearly fell out, but my sister did help. (Remember, they have my niece to watch out for too.) Once we got me buckled in, my brother-in-law took my push handles and swung me around to race to get inside. (I have a vestibular disorder too, so I need to go slow to avoid an upset.) He didn't seem to have any sensitivity that there was a human in the chair. It was like he was pushing a doll or a shopping trolley.

    We eventually made it inside. I whispered to my sister that I had to use the toilet straightaway. My brother-in-law and his sister just rolled their eyes. So, I waited until we ordered then asked about the restrooms. My sister had called ahead and they knew we had a person in a wheelchair in our party, yet they seated us on the first floor; the bathrooms were upstairs and the manager who had a key to the lifts was out of town. So, my sister or one of the staff had to take me outside,up a long ramp, through doors without push opening buttons and through the upstairs seating area every time I had to go, which was at least four times during dinner. Every time I asked for help, my brother-in-law and his sister rolled their eyes. Plus, when the waiter came, he didn't even bring me a menu. Some of the staff were very nice, but many didn't make eye contact and so many people either stared away or swerved away when we were out walking. It made me feel like I shouldn't have gone. It took A LOT out of me to make that trip and when I got home not only was my pain awful, but also, my feet were scary swollen...despite the physical difficulties, I think the psychological hurt more.

    Has anyone got suggestions on how to deal with this kind of thing? My heart goes out to those of you struggling through loss with this on top. How does one cope?

  7. #7
    Your vent is well justified. This ignore thing has touched all of us at various times, but those ABs you encountered that day were particularly insensitive.
    I have had periodic paralysis all my life. I lost my ability to walk in 2011 beginning with a spinal block, which was used for a hip fracture caused by periodic paralysis.

  8. #8
    I hear you Sugarcube. A long time ago I came to the conclusion that I was going to have to be more forceful if I did not want to be bypassed or overlooked, especially in receiving lines. I extend my arm and use it like a railroad crossing gate. They do not get by without acknowledging me.

    I could write a book about negative experiences at funerals. The worst is when someone who was aware of my injury decades ago but were not aware of my post-injury life comes up to me and and bursts into tears because of the tragic, suffering life I have had all these years never being able to walk. They act like its my funeral and grieve over my lost life. Then there are the people who abandon the family receiving line to help me when I do not need or want help. Like they think I am more in need than the grieving family. I do not go to wakes anymore because of these things.
    You will find a guide to preserving shoulder function @
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  9. #9
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    Sorry about your brother's untimely demise, that is a tough pill to swallow, and the insensitivity to boot is just tough. I guess maybe I have grown a hard shell over the years, and most of these things don't bother me any longer. Or at least I don't allow myself to dwell on them. People simply do not understand or want to understand.

    My insignificant experiences have been with small children, they look and wonder; and sometimes they even ask what happened to me. Often to the noticeable distress of one or both parents, who I quickly shush. After when I have finished my dialog it is good to see the understanding dawn on them. This is where you have the opportunity to teach some manners and consideration with youngsters early in their lives. Maybe just maybe they will not grow up to be rude adults. This is how I treat my grandchildren and their friends as well. They do swarm me, which of course "I" love. But they sit and talk as well, I do not make myself a taboo subject.

    Those adults who simply ignored you and were rude, they have never been educated, siblings and their spouses, need to be totally educated in the things that obviously distress you the most; the "Dreaded Bathroom" the immediacy, or the urgency of your needs. Surely if they were caught short, they would appreciate some consideration.

    Well stated vent though.

  10. #10
    Thank you everyone for your support. I am not invisible here, am I? These posts were nice for me to see today.

    I have actually been working on my lack of assertiveness sometimes. This was so unexpected. I was unprepared. I did try a couple of times to extend my hand out, but that too was ignored. I eventually stopped trying. It was such an emotional day. It just didn't seem worth the continued effort. Most of the people who reacted this way I had never met before. I did see some of my neighbors from long ago, which was very refreshing. I was also contacted by someone who I spent rehab with 30 years ago because she wanted to offer her condolences. So there there were some very nice heartfelt moments. I am going to try and focus on that for now. It is all still so raw. I miss my brother.

    I really would like to write a letter to the editor of my local newspaper and also to the funeral home, but I don't think that would go over too well with my family right now. They have a lot to deal with too. I don't want to add to any stress that they already have. I love the idea though, and will consider doing it at a later time, when everyone has had a chance to cope a little more.

    Thank you again for the responses. This means more to me than you know.

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