tag:blogger.com,1999:blog-5751271189667675662.post2269832073131866088..comments2024-03-28T09:19:51.567-04:00Comments on Look Me In The Eye: An Ethical Dilemma For Autism OrganizationsJohn Robisonhttp://www.blogger.com/profile/07407165016025447113noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-5751271189667675662.post-88033379676450113022017-10-12T05:15:27.734-04:002017-10-12T05:15:27.734-04:00We are a small non-profit with limited funding at ...We are a small non-profit with limited funding at present. We run groups where autistic and non-autiistic communicators co-learn and co-teach on the topic of social language diversity. We are currently running a group with two universities in CT. One university provides interns from the department of communication and the other provides free parking. <br /><br />Our autistic and developmental assistant are paid for their travel time and assistant time for the group sessions. It has always been that way. If individuals with autism who have completed 2 training sessions would like to help advance our work--they are PAID. Their input is invaluable to us. I agree with John. I think it is far to common to see the differences and difficulties relating to communication with "typical" communicating peers as a one sided 'disabled problem' rather than a "genetically stable natural variation" in social language--requiring a two-sided need to learn. With a one-way view, people may not work as hard to provide speakers and workers with paid opportunities that are often provided to non-autisitic speakers or assistants.<br />Inclusion Teaming Blogspothttps://www.blogger.com/profile/11448413967167916455noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-63395038002541309922017-08-04T00:28:54.893-04:002017-08-04T00:28:54.893-04:00Not only those organisations don't pay their a...Not only those organisations don't pay their autistic staff, they also require from them to hide their autism. In Holland we have or own brand of Autism Speaks, called the NVA, their recruitment ad says: "Are you the parent or the partner of someone with autism, or are you yourself a person with autism and you can keep enough distance from your own problematic, and you can and enjoy working together in a team, etc.". Another organization, SIRE, which was looking for autistic people for their campaign against stigma, turned down people for being "too autistic". The NVA, again, justified not having autistic people on their board because "they have problems with communication". Please mr. Robison, Tell me how not to despair. And I'm not even talking about the total lack of persons of colour in their idea of autism, thus maintaining the diagnostic bias against them. Help.Fysiohttps://www.blogger.com/profile/02816773055258601325noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-42962177603952567282017-07-10T16:49:09.548-04:002017-07-10T16:49:09.548-04:00You have brought up a great point, and one I'm...You have brought up a great point, and one I'm seeing with increasing frequency in the environmental justice movement as well. I head a small nonprofit working in water policy and advocacy. Though our budget is extremely modest, about $11,000/yr, and staffed entirely by volunteers, we endeavor to pay speakers' travel expenses at a minimum, and usually a small honorarium of $50 - 100. (Recently we paid $250 but didn't reimburse for travel within the metro area separately.) <br /><br />Does this seem like enough? <br /><br />By the way, we get small federal, state, and philanthropic grants, and I've never seen a situation where speakers fees were disallowed costs. Unknownhttps://www.blogger.com/profile/18139321044261229720noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-35676984447191062702017-06-26T12:05:54.804-04:002017-06-26T12:05:54.804-04:00Are we talking about a corporation or a non-profit...Are we talking about a corporation or a non-profit? <br /><br /><br /><a href="https://goldenslot.gclub-casino.com/" rel="nofollow">สล็อต ออนไลน์ ได้ เงิน จริง</a><br /><a href="https://goldenslot.gclub-casino.com/goldenslot-mobile/" rel="nofollow">goldenslot mobile</a>UplayOnlinehttps://www.blogger.com/profile/07056159688537638797noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-25110266181435632922017-06-07T15:14:47.783-04:002017-06-07T15:14:47.783-04:00John, I appreciate your objection and frustration....John, I appreciate your objection and frustration. I've not truly had incentives toward presenting unless you consider a discount to the registration fee (yes, I still pay). What I would share and try to do in classroom settings as well, is to include others in the opportunity and identify a co-presenter. Often I will coordinate a meal afterwards and a small token of my appreciation or possibly cover the registration fee, paid out of my own pocket. I absolutely take on the mentor role in helping shape the research and presentation because the opportunity for the co-presenter wasn't necessarily something they sought out to do. <br />I think if you can reshape opportunities you are provided to bring attention or opportunities to others, more people benefit.<br />DMDaniel Molinahttps://www.blogger.com/profile/04630600993603464661noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-86298252339585764952017-06-07T13:06:48.385-04:002017-06-07T13:06:48.385-04:00Then there are the people who call any spoken or w...Then there are the people who call any spoken or written statement by an autistic (a book, an article, a conversational remark, or anything else) "verbalizing behavior."KateGladstonehttps://www.blogger.com/profile/07062492442607584456noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-36532426474737920572017-06-07T13:04:53.370-04:002017-06-07T13:04:53.370-04:00It gets worse than that, Dr. Q! Often, when I he...It gets worse than that, Dr. Q! Often, when I hear that a parent or researcher or someone else is writing a book about autism in adults, I contact him or her to ask if autistic adults will be interviewed and quoted. At least 95 times out of 100, I am told (by the person who is writing such material) that he or she does not wish to speak with autistics, but only with the autistics' family members, care-providers, therapists, or other past/present associates (consensual or otherwise) of the person.KateGladstonehttps://www.blogger.com/profile/07062492442607584456noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-32429325596469054522017-06-06T23:08:31.662-04:002017-06-06T23:08:31.662-04:00Here's my thoughts...I've never encountere...Here's my thoughts...I've never encountered anyone soliciting an adult autistic's perspective; Ihave my doctorate, and I was diagnosed with autism four years ago. I have no avenue to help. No disrespect intended, but it seems if I don't write a book about my experiences, no one cares for me to have a voice that could be helpful. Dr. Qhttps://www.blogger.com/profile/02899682581195753965noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-63742354185357135562017-06-06T20:58:35.819-04:002017-06-06T20:58:35.819-04:00I feel incredibly safe calling these ethical dilem...I feel incredibly safe calling these ethical dilemmas, yes.<br /><br />It severely limits the possibility of participation in the conversations being had *about us*, overwhelmingly by non-autistic people who are *being paid,* when we are not being and therefore can't. (Because we overwhelmingly live in poverty, or have jobs we don't get personal days or vacation days from, and therefore can't afford uncompensated travel.)<br /><br />I have no problem saying that's an ethical issue. That we're left out of conversations about our well-being simply because we can't afford to participate on the terms offered.<br /><br />I think it's a different scale of ethical issue when we're talking about majorly well-resourced organizations (and some of the richest ones are indeed non-profits) or corporations as opposed to small, grassroots organizations that are all-volunteer themselves, but it still is one.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-35535837595689589402017-06-06T19:39:33.427-04:002017-06-06T19:39:33.427-04:00Hi John,
Are these ethical dilemmas? It is too so...Hi John,<br /><br />Are these ethical dilemmas? It is too soon to make an accurate assessment without knowing all the facts. <br /><br />Are we talking about a corporation or a non-profit? <br /><br />Were these entities asked to compensate the speaker & provide accommodations? If they declined to compensate, etc, was a rationale offered?<br /><br />If a rationale was offered, did it seem reasonable given the size & resources of the organization? <br /><br />Were the entities given a chance to address and rectify their practices and they outright refused?<br /><br />It is important to note that if we’re talking about a non-profit, there exists a mind numbing myriad of rules and regulations that must be followed. Not only federal and state regs too. Expenditures must be approved in accordance with fiscal policy. Funds contributed to the entity may have restrictions on them. Was the expenditure incorporated into the adopted budget for the year, is it free of any conflict of interest, etc. <br /><br />This does not even touch upon the economics of compensation/speaking fees for presenters. <br /><br />The goal is to have a variety of autistic voices heard. Without having all the facts available, is a condemnation of an organization as "exploitative" going to increase or decrease the likelihood of achieving that goal? I think organizations would become wary of asking for those voices for fear of being unfairly judged.<br /><br />Lest anyone be confused, this is NOT to say that autistic speakers shouldn’t be paid. Rather, what I am saying is that each situation must be examined on an individual basis and where there is room for improvement we need to inform, suggest possible solutions, and allow the time necessary for policy & procedural changes. <br /><br />I can see how it might seem objectionable from an external point of view. My past-life exp. in public accounting gives me a WILDLY different perspective. It could be unintentional oversight, it could be related to financial policies. Don't know though until more questions are asked. Hard to solve issues though when someone feels they're being put on the defensive.<br /><br />Everyone responds better to positive reinforcement and it may just be a matter of shaping the organization’s behavior. I think it would be self-defeating otherwise.<br /><br />Best regards,<br />Denise LombardiUnknownhttps://www.blogger.com/profile/14737915480945347346noreply@blogger.com