There is something insidious, about this system as it is set up in which, the buyer or the one gaining a product sets the price. In that, when i hire someone to clean my house, they tell me how much it costs. When i hire a plumber same story, carpenter same…. etc… But when i look around i see this really strange system when it comes to LD.
It seems the buyer or the researchers that need subjects in possession of what it is they are researching. They use their studies and often make thousands of dollars an hour just talking about what they learned from the time we gave them at the rate they set. Then they write a book. They get royalties for this book etc, and they are payed by the publishing company and such. Again, they make thousands….
Then, they do private consolations, many charging upwards of $100 an hour….. Making even more thousands…..
They offer us a 1 time deal of $25 or $50 dollars depending…. This is like, less than 3% of what they make. Given our situation, especially later in life. When we are adults, who’s ability to earn has been compromised…. Given the amount parents sometimes spent to get their kids IEPs, Given the cost of secondary education on top of those things… And the lack of financial security and the lack for many with LD of regular income at a rate that can sustaine us, consider too the nothing the state provides to those of us on disability.
Then think about for example, whole sale and retail pricing differences. Usually those who sell wholesale, are refered to as “suppliers.” The suppliers, sell their product to the retailer… at a price they set for their product. Usually, the retailer, that buys direct from the supplier, sets a new price for the product of double to double and a halfish what they payed to the supplier. So the supplier typically makes half of the amount of the retailer to a third of what the retailer makes off of the object then sold to the consumer.
If one takes out a $100 loan fromt he bank and the bank says you have to pay them $90 in interest each month, it is quite criminal. It takes advantage of the consumer. If you pay your contractor $5 because that is what you think the job is worth and his hourly wage is $500, you wind up paying or going to court. Because, His time and his service is worth what he says it is worth, and he has every right to charge whatever he wants for the service he provides.
It seems unethical then, that these researchers publish books and give speaking tours which we have to pay to hear, and pay money to own…. They continuously get payed for the books they write, that are about our LD. They make 7, 8 figure incomes. It seems what they offer us is unethical in that it is taking advantage of a whole class of people. I don’t see how when they take advantage of us paying us less than 3% of what they make off the product we sell them at a rate they dictate to us, how they can then expect us to honestly believe they are at all interested in helping us. I think this is an abuse of the disabled. If one wanted to study a vet, that lost his leg in war this way, you wouldn’t offer them 3% of what you would make off of it.
Our disabilities are making some people a fortune, that we are not benefitting in any substantial way from this, is… well disturbing to say the least and indicates the value these researchers place on us and our time. I could make more than 5 times that amount selling my body on the street corner. This seems to me very very very very wrong. This system of dictating to the learning disabled what they are worth. And if they think we are so stupid that we don’t see the discrepancy between what they make and what we make and the inequity of it, then the last 25 years of research hasn’t taught them a thing. Maybe they should test themselves for ADD as in over 25 years, they have overlooked that we are human beings and that though we have some issues that may not be typical, we were not boirn literally lacking brains.
Service providers form unions to protect themselves from such abuses…. Maybe we should as we do provide a service to these researchers. Maybe rather than letting them tell us what our time is worth, as we have ‘specialized experience and knowledge’ of this field of LD as well as owning it. Maybe we should be telling them what our services as guinea pigs of research is going to cost them? Then parent’s have additional money if they have to sue over IEP, then adults with various LD can maybe afford a bit more for themselves and have an emergency fund when they lose their day job. Or have trouble getting a job. Then parents who spent their kid’s college fund on the iep issue, can atleast begin to have something to put back in that special precious fund, maybe never all that they spent, but something is something. And buying us dinner or not even buying us dinner is hardly worth our time when we have much larger problems and we are in possession of an unusual product… So what is your time worth to you? What would making a dollar on every hundred made by the experts rather than a penny do for you and your life, or for your child’s depleted college fund??? The money still wouldn’t be enough to fix our lives… Far from it, but it would be enough to atleast help a bit. And a bit of help, is in many situations very necesary and can make a huge difference.
These ADHD organizations that are out there are fabulous. They answer some important questions…. They offer assistance and advice and ideas… What they don’t do, is advocate for our financial compensation when we are part of studies and research. They do not protect us. Sure they may collect signatures for law passing and that is all well and good. But we need to protect ourselves from life, and some of the all too typical situations that happen and can cause us alot more difficult than that caused by our LD.
So please ask yourselves and think about this idea, of unionizing… Because as a union we suddenly have political clout, which means we are far more heard and respected. Also, we are protected from being taken advantage of. I think personally it is a rather brilliant idea. But i would love to know what others think about it. I am sick of watching others make carreers and massive amounts of money off my disability, living in mansions while i have trouble paying my half of the $400 rent because getting a job is difficult and i went back to school, so i don’t really make anything now. It seems wrong my parents should have to pay my rent, especially if i am regularly taking part in studies that others make massive amounts of money off. Seriously, this situation is unethical. It is damaging. And we are worth more and so is our time. So let me know what you all think.