There are those who think they have something ‘special’. More special than what other PWD offer. Or they have a ‘reputation’ to ensure, as if other members of their very own community might ’embarrass’ them. They protect their blogs from comments, their words from republication and so on.
This really buys into abelist societal views. In fact, their primary concern is what ablelists might say if every PWD were allowed freedom of expression. Because ablelists really do think there is a ‘certain’ way to live, a ‘certain’ way to be, a ‘certain’ way to express and so on.
In our community, nothing is ‘certain’. But organizations spring up which silence the community for the most part, get funding and become our service providers and declare themselves our service providers and do, in turns out, provide ‘some’ reasonable services.
But the price we pay is very high. And if a volunteer for one of these organizations is reading this and feeling a bit concerned – you probably should be. That strange feeling you are feeling is probably the reality.
If you work with an organization and are reading this and have no concerns – you get an A+. You are likely encouraging the community you serve to engage with you, guide you and are open to hearing from whomever and granting them a voice.
You’re probably willing to try to understand complaints, even if you can’t accommodate all of them. Let’s be honest, as PWD we don’t have answers or funding or technology for every accommodation. But the right thing to do is to say that, LOUD — so we can begin to work together to make it happen. This is a form of transparency.
The cool thing about transparency is there are few side chats, and super few we wouldn’t share with the group. If you feel anxious about this part, reconsider your efforts and ask what your real feelings are about certain members of our community. We all fall into judgmental arenas – we all have stereotypes to overcome – we all have prejudices. But none of us get over them hiding them. None of them go away if these feelings are shared only with those who would agree or say nothing.
Consider our most recent election. How stunned some were that hateful thoughts carried the day. I mean, we made those illegal a while ago right? Remember ‘hate crimes’ legislation? That was going to solve all of this, or at least head us in the right direction. But we sat on our laurels and equated the lack of hearing hateful things to mean there are no more hateful thoughts out there.
I can’t remember how many times I spoke to people who said they thought things were much better. We weren’t out of the woods, there were still a bunch of ‘isms’ out there, but we were doing so much better. I wonder what they are thinking now? Many tell me they are speechless, shocked, traumatized.
But to me, this was a matter of course and has happened historically in different contexts over and over and over and over. So this is not a new frontier of ‘this never happened before’. Our inability to see this is what leads even our own organizations to fill justified in engaging in similar, although more politely worded, methods.
If we are a community, and many organizations refer to us as just that, why do some think they know more about our needs (even the needs of those they have never spoken with) than the individual does?
If we are a community, why do so many organizations that serve us have less than a democratic process? Why is their decision process negotiated in meetings held behind closed doors as folks vie for the funds these organizations have to distribute?
If anyone thinks only Washington DC is corrupt, you are probably sadly mistaken. I suspect several PWD organizations would qualify under the same criteria we hold our government to. Closed door discussions involving cash and private interests which are twisted (that’s what’s happening when they say, “How shall we present this?”) and publicized within the community as a service to us sounds the same as we we complain goes on in government buildings all the time. And they are very convincing people, just like politicians – because, sadly, our system has made them politicians who will to sell our needs in exchange for services which will continue their existence, their funding.
If I had a dime for every time an organization told me they use certain verbiage because it is ‘standard’ (add here, ‘in the abelist community”) or ‘appealing to funders’. Really??? – Because as a member of the community you say you are serving, it’s not appealing to me.
‘Homosexual’ was used in the same way for years, until folks finally had enough and said it was completely unacceptable to use a medical diagnostic term for a community whose orientation and love and intimacy was healthy.
Generally, folks then go to someone else who is more accepting of whatever term they are using, which is more-or-less offensive to most, and raise them up (like a government politician) as evidence that their decision is good and justified. Thus silencing or dismissing all the complaints about it. Again, this is all for the greater good, so don’t worry anyone – it will be fine. (o.O)
These organizations are willing to use terminology able-bodied people use for us to secure funds. They are will to conduct and support research funded by able-bodied people with pre-existing premises of outcomes and encourage PWD to support these efforts. In the end, some do more harm than good.
They are willing to set our agendas and ‘tell’ us to follow as opposed to having a debate about what our issues and concerns are. They avoid the democratic process citing it as too time consuming, distracting or hard to manage.
This is what elitists do – they already know the problem and the solution and they don’t need any additional input because, well, they are so much more intelligent than you or I.
Ultimately, we need a democratic process, but probably not the one we see in the United States and Great Britain. We need to avoid a ‘funded’ right to speech. We need to avoid the monopolization of communication channels by whatever means – be it money or a deluge of social media hot shots. For this, we will need new software which limits the number of posts one person can send out over and over and over again to be heard to a greater extent than any other member of our community. And we will need to use such software to prevent ourselves, as individuals, from being susceptible to such barrages (because we are human too and we can fall victim to these same kind of thought processes).
This means we likely need conferences which do a couple of things. First, they educate our community to watch for the wolves within our community. Wolves are not bad creatures. They are survivors. They have a role in the eco-system. But, so does every other creature. So we need to make sure our wolves have an ‘equal’ voice, but not a greater voice. We need to remember that in many societies, money tends to corrupt and we must hold organizations which receive outside funding to a different standard. We must assume there is some misdirection in them and demand transparency and a voice.
We cannot allow them to put some of our voices on the fringe so those voices don’t ruin everything they’ve worked so hard for. See how this becomes more about them than our community? And it’s an easy trap for organizations to fall into – it’s the nature of our brain to want to survive and this extends to our own self as well as everything we identify that ‘self’ with, including non-profits and other organizations we may work for.
So we do this out of love for them and love for our community. We watch and point out when we have concerns. And if the organization is does not or can not listen (because they are neither democratic or transparent), we must – YES we MUST walk away. We must encourage others to do the same. If we leave without the others, they are left in a dysfunctional organization which, as it becomes more desperate to survive, will often become even more dysfunctional, unless it can come to the place where it can ask for help from healthier (democratic and transparent) organizations or the community itself (which converts them to a more democratic and transparent organization).
The reality is most of these folks began with good intentions. They feel their intentions are still good. They defend these intentions because they really want to do good. But we can do better, and if we are to progress, we must do better in our organizational structures. And it IS possible. And we can begin now.
Just as we discuss being careful how others spend the funds which are supposed to help our community, we can influence the organizations that receive so many of the funds we need to make progress. We can participate in letter writing campaigns that make funders aware of organizations which do not provide PWD they serve a voice, which are not transparent within their own community, which are funding projects, which in some cases, do not even support their own community.
This is a horrific idea for some – because if we do that, who will decide who gets funds? Or worse, will these funds just disappear altogether? If PWD organizations which are supposed to represent us are discovered to not be representing us, will our ableistic society decide we simply can’t run our own organizations?
There’s a simple solution to this concern for the so-called ‘leadership’ – change. Change and start listening to the community you serve. Let go – you are not Gods or more wise – you are really just incubated. You didn’t see Trump coming and, in the same way, you are likely out of touch with the very community you serve – buying into the hype campaigns which are fluttered all over the place by other organizations or so attached to your personal agenda, unaware of where the community is and has moved to.
Trust me, your logo, your brand, your image, your reputation is not as important as the community you serve.
And to those I am calling to action – be somewhat smart. Don’t leave yourself homeless. Observe the organizations serving you – see them for what they are. None are saviors and they all have ‘agendas’. The question is really, do you have a voice in their agenda? Are you included in how decisions are made? Not from behind closed door conversations, but in the open, where all can hear your views?
And let’s be clear here, being included is not the same as ‘getting your way’. We need to stop saying organizations are bad because we didn’t get our way and look more at whether our voice was heard. We’re we allowed to speak to the governing body? We’re we allowed to speak broadly to other members of the community?
We can do this in several ways depending on the group. If there is a website with a forum, does the organization automatically remove posts critical to them? That’s not listening to you or letting you convey a concern to the community. If a post is civil but critical, it should stay on a website so all can assess the validity of the argument. It is fine to close comments after a while and to remove vulgar replies or personal attacks. These things are not productive in any way.
But organizations which force their community to talk amongst themselves in small groups to avoid open ‘conflict’ discussions are not healthy for us, nor helpful to the leadership of those organizations in understanding their community’s needs.
So, before sending in your check, check the organization’s forum and see if there are any critical posts. If not, let it be a warning flag. I recently just turned off an Amazon Smile donation after realizing the organization requesting these funds had no ability for the community to vote for anything, voice for anything in a public or formal way, failed to respond to formal requests and provided a one-way communication forum (aka, we’ll send information to you, we want you to link to that information, but don’t expect us to reciprocate because we are ‘special’ and you are, well, you know, you are not us.
Perhaps they mean by ‘you’ that we are not as important, as smart or whatever. They might be afraid of unpredictability – but honestly, my whole life is unpredictable – it is one of our community’s constants. So an organization which is so afraid of unpredictability they shelter themselves and hinder conversation is really not being honest with the community they serve or the people they take money from to serve their community (remember that community is you and me). The lie is on both ends, and many would say it is necessary for the greater good.
I would argue it’s a trap and once an organization is in it, it’s very hard to get out of. It’s a deal with the devil for money. They think in the end they can do good for us, but ultimately little good comes from it. On the other side, these organizations risk the demoralization of those they serve, further making those folks feel incompetent, under-valued, less important and worthy of less consideration than others around them.
I’m pretty sure that’s not the message they want to send – but I’ve spoken to enough organizational refugees to know it is exactly the message received. Sometimes these organizations view these refugees with a shrug, suggesting they can’t be happy anywhere. But it turns out this is not true either, many go on to find new organizations that provide them with purpose — and as it turns out, they are often more democratic and transparent.
Organizations may see their refugees and individuals, but forget the last one as soon as the next one comes to the fore. All organizations have refugees, but organizations which ‘assume’ the number of their refugees is no more or no less than any other organization? Well you might want to reconsider. You might want to have some exit interviews or begin to document some of the issues those who left experienced.
Then you can decide, hopefully through a democratic process, whether that is a community you can serve or if it is beyond your capabilities. Then we can all be openly honest. I have become inherently distrusting of any organization that claims to represent all members of the disabled community. It is quite a feat and not easy to do. If they are neither democratic nor transparent, you can be pretty sure they aren’t serving everyone, because not everyone has a voice.
This is likely marketing jargon that assists them in getting funding. They will often work to suppress or discourage the formation of other groups. If a new group appears, it ruins their marketing campaign and impacts their image. They may also, for a time, include a certain group to avoid their making an independent organization – another strategy to appear more inclusive than they really are.
None of this makes an organization bad, it happens quite a bit in today’s world. There are limited funds, these organizations want them because they think they really are providing a unique and invaluable service. But without community forums and input – they are incubated and unlikely to be viewed by their numerous refugees in the same way.
Just because an organization doesn’t force someone to leave, doesn’t mean they are not creating refugees. Many proudly say they never evict anyone, not realizing the suppressive and constricting environment they have created is as good as an eviction for many. PWD, like all other human beings, need both purpose and a sense of self-direction. An organization which directs from behind closed walls and then expects volunteers to carry forward their mission provides neither, and as members see there is no where for them to go further in the organization, they leave. This is a not a personal choice, many leave angry or sad or with grief. These feelings sound oh so similar to those felt when one is evicted.
And, not to concern these organizations further, the refugees now add up to so many they are organizing themselves. They are rough around the edges, what they say is not always pretty or polite, and what they are doing? Oh my gosh – they are effecting change the best way they know how – without any elitist input or guidance.
And there is a scary component to this. They would do far better if they had guidance, but they simply can’t trust such guidance, from folks in organizations which turned them away, to be honest or have integrity. They see the old guard as having an agenda inherently sold to the able-bodied society that funds them. These old-guard folks don’t speak for them because they can’t part with the funding at this point.
It’s okay, it’s a natural cycle. But when the new guard rises up, and it is rising up as we speak, we will hear those incubated from these refugees, who have rationalized and justified their treatment of them, wonder how this could have happened, what is wrong with these people, don’t they see what their doing is not good?
Well, first, I can’t say what they are doing is not good, but they might be able to do it in a different way, I agree. But to do that, we all have to sit at a table and be honest with each other. And if you ask me, I’d side with them, odds are the ‘old guard’ can’t be honest. If they are willing to sit at the table at all, they will leave and huddle and try to figure out how to get their way, how to ‘win’ their argument, focusing very little on what was said from the other side of the table.
This has been my experience in past political upheavals where a significant portion of a community is left feeling so unheard and unconsidered they form a political faction of their own and move their agenda forward. Most interestingly, they are driven by passion, not intellect. Passion is very powerful stuff, and they will go a long way with it. Those who are ruffled by them, or fear them will likely work more to disband them than to hear them.
So, it’s time to decide what works best for you – others deciding your future, or affiliating and working with organizations which invite you to share in discussions about our future as PWD, our priorities as PWD, our efforts as PWD. I’m opting for the latter.
I’m finding it’s a hell of a ride. A freaking roller coaster for sure – but these folks are talking, they’re really talking. They’re planning, not just for PWD, but how to bring down all these ‘false Gods’ our community has supported for so long. I’m ready to buy a torpedo or two and help with some of that.
But, there are some good folks in the old guard. Some who really do care and really do listen. So I’m going to do my best to throw them a life preserver, to invite them on board. The ship is coming, all are welcome, but who will be brave enough to jump on board?. It’s a hell of a ship, a hell of a ride – storms a brewing – but we’ll get their alive
then we will rinse and repeat. It’s how progress works – but it is time to move forward now – to make things happen.