Here's a religious/ethical/philosophical question.
One of the children has Down's Syndrome. We've known how to screen for this for decades and I rarely see any DS children anymore.
Is it right for parents to have a child who will have a more difficult life, and will need taxpayer-supported help long after the parents are dead? Isn't life difficult enough for those of us without DS?
What should parents do if their unborn embryo is known to have DS?
1
Praise to this couple for lighting up the lives of so many people!
8
I don't know that it's right or appropriate to think of people with intellectual disabilities as patients to be cured.
3
@caitlin You are right, self-advocates are deeply insulted by “cure” language. They consider themselves different but not less.
Now mitigation is another matter. A person with communication challenges provided with a device that “speaks” typed language, a person who uses a wheelchair provided curb cuts — these sorts of things are welcomed because they allow the disabled person to more fully participate in the community-at-large.
2
@caitlin You are right, the self-advocacy movement finds the notion of cure profoundly insulting. They are different, not less. Now mitigation is another matter. If someone with communication challenges can be given a computerized speaking device, or someone who uses a wheelchair is provided with curb cuts — these sorts of things allow people with disability to participate more fully in the world. I will add that the self-advocacy movement has a motto,”Nothing about us without us.” It’s not clear from this article if any disabled people have been included in the planning or implementation of this village (and anyone reading this and shaking your head, your ableism is showing).
1
Bravo to Rabbi Zalman Grossbaum and his wife, Toba Grossbaum! People - children and adults alike - who live their lives in the autism spectrum are too often marginalized in today's society. Sometimes outright shunned, simply because they are different.
But aren't we all, well, different? This wonder, special, and safe environment affords precious opportunities for life learning, in addition to creating a greater sense of self esteem for the participants. And bravo to the trained volunteers who are essential for this mock village to succeed.
Many more of these supportive mock villages are needed throughout the United States. They would not only aid individuals living within the autism spectrum, but would also serve to enhance public awareness about autism.
7
Again I ask, where is the data?
The professionals who work with autistic people, such as special educators, behaviorists, SLPs and OTs, developmental psychologists and physicians, use evidence-based approaches. Then they take additional data to monitor progress and determine if other approaches are needed.
Sadly, the history of autism is littered with interventions that were abandoned because they were completely spurious: facilitated communication, chelation, adverses such as electric shocks, and the list goes on and on.
Is the “town” described here effective? Show us some hard data!
2
@David
I agree that data is important but these programs are few and new. How do you measure effective? If a visit give a person the sense of accomplishment and some peaceful interactions for a period of time, even though limited, is that not, at some level, effective?
14
Not everything can get measured quantitatively. Isn’t it wonderful that autistic folks have a nice, accommodating place to visit and interact with people. Isn’t that worthy on its own?
9
@Jeanine I can tell that many of you commenting here have no direct experience with DD (here’s a hint, if you don’t know DD stands for Developmental Disability, I’m talking about you).
Is this how little regard you have for disabled people that you think all they deserve is a “nice time”? They deserve our most intelligently designed efforts in order to help them reach their full potential. We used to think many people with autism were incapable of speech; then the field of speech-language pathology advanced, including the development of assistive technology and whoa! We found out that we had written off people that we shouldn’t have.
As I said elsewhere, the history of autism is littered with false promises by interventions that were not based on anything but wishful thinking. Unless Chabad can show me that they have evidence, or are at least collecting it, I will remain extremely unimpressed, especially when I compare their efforts to the successes of established interventions that have actual science behind them.
2
What a wonderful, kind, inclusive, and supportive place.
15
This place sounds so important, special and compassionate. I wish one could be built in every city. I would definitely volunteer if one was next to me.
20
Welcome to the world of special education. It's like rich donors just discovered it and built their own specially adapted Disneyland. Cute.
8
Yes, Rabbi and Mrs. Grossbaum is an inspiration.
21
An article about something positive for a change. What a relief!
19
Nice!
8
Well done, Rabbi and Mrs. Grossbaum!
20
Perhaps I come from a particular biased perspective - my 9 year old son has autism and is experiencing success at learning these skills in the real world.
..and bless this family for pouring their hearts and resources into serviced for the disabled!!!
And yet - the underlying explanations and assumptions behind the need for a place like this are problematic if we are to move toward an inclusive society. For example, I hope we increase training for store clerks and bank tellers so that hand flapping or other behaviors by differently-abled customers are addressed appropriately and do not mean you will "never be accepted there again." I sincerely hope that resources begin flowing into education & accommodations for people with disabilities so that creating villages where they don't have to feel like outsiders is not necessary.
22
@Sara H My daughter is in her mid-twenties, and while "real world" settings would have be ideal during her school years, her behaviors made taking her out dangerous to herself and others. She has subsequently matured and is able to go out with supervision and enjoy the sights and sounds.
I am now a behavior analyst, and I can assure you that the facility that the Grossbaum's developed is far superior to either in-home or "real world" settings for teaching the discreet skills of living as independently as possible for many people.
As you have heard so often, the needs of each individual are, well, individual: when you've met one person with autism, you've met one person with autism. Best wishes to you and your family; I know how challenging your path can be. Thank you to Rabbi and Mrs. Grossbaum!
23
It doesn’t appear to be a space to keep them
separated from outsiders, it’s a safe practice space for them to learn and build skills. Then they have more confidence to do the same practices out in the “real” world. Schools, sports, families and community are all forms of the same thing.
17
@Sara H I understand your feelings about store clerks being more understanding but the article noted head-butting, jumping and screaming, not simply hand-flapping which are dangerous behaviors. If it were only hand-flapping I doubt any public place would ask a customer not to return. I've worked retail and sadly clerks are barely trained to ring items and accept payment, there's no budget to teach cashiers to handle differently-abled customers. It's awkward for everyone when a customer behaves differently than expected and we need to be kind toward all, but physically dangerous actions are intolerable and we should not expect low paid employees to bear the burden and risk.
6
I have seen this group in our Shoprite for years, the young people studiously learning the routines so many of us take for granted. This is a wonderful program that should be adopted at Nationwide
30
I really needed this Today. Very hopeful, and such a great, creative learning experience for all the “ students “.
Congratulations and Best Wishes.
24
People with autism often have challenges in generalizing things
learned in one setting to another. I would like to see data on how successful the students are in using their newly acquired skills in the actual community.
The most useful thing all of us can do for the disability community is use our votes wisely. The current administration has cut SNAP (foodstamps)and is promising to cut Social Security, Medicaid and Medicare.
These programs are the lifelines for the disabled, these programs pay for food, housing, supervision, personal care, transportation, job support, day programs, leisure activities,, andeverything else that make safe, healthy and satisfying lives possible for people living with disability.
The party that promises “limited government” is promising to limit the disability community out of existence. Ironically, that is the party the ultra-Orthodox Jewish community tends to support.
28
Now why- why why would you go and make that comment?!
The term Ultra Orthodox is everywhere used as a canard. It is meant to imply extremism. So first, by presenting an "irony" you have defined these giving people as extremists and the irony for you is that since you know "they're all alike", that these people behave in a way you don't expect from "them". The substance and tone of your letter, indicate that you see yourself as a progressive. That, my friend, is the real irony.
4
@Solomon No I see myself as a proud Reform Jew who I
takes our tradition’s call to social justice seriously, as well as the mother of a charming young man with autism. He is the beneficiary of many years of evidence-based inventions, many provided by his public school. Despite all the wonderful progress he had made, the fact remains that he will continue to need supports that we, his parents, will not be able to provide from the grave. A robust social service system, will allow me to peace when my time comes.
Finally,check your reading comprehension: I used the words “tend to” not “all of them.”
This reminds me of those entire towns that exist...I believe it's in the Netherlands (naturally!) ...and which were built and designed expressly for people with dementia and alzheimers. These towns are almost like something out of the movie The Truman Show, insofar as, everyone who works in the town knows that it's a 'designed town' surrounded by secured walls/gates. The only people who don't realize this are the residents (patients).
The great thing about these towns is that the residents/patients get to live very close-to-normal lives. The towns have everything one would expect to see... movie theatre, coffeeshop, drug store, grocery store, etc. The residents/patients can move about freely, and any workers that they interact with at the market, the restaurants, etc. are all trained and understand their clientele. As a result, these folks with dementia and alzheimer's have a better quality of life, and aren't in clinical institutionalized settings.
If only such a system could exist in all countries!
49
@Lisa I can’t speak about dementia but as the parent of a young man with autism, I can speak about developmental disability.
If the members of Chabad want to isolate themselves from tne larger community, that is their prerogative.
But suggesting that people with disability should be sequestered out of sight from the rest of us is demeaning.
They belong with us, in our community, it is their community too. If they need extra support to make that possible than it is up to us to provide it.
3
@David LifeTown is a fully inclusive and accessible place where the entire community interacts together. Children, teens and adults, with and without special needs, participate in all the programs, so that they are all growing and learning from the experience. The programs are all designed as a springboard for inclusion at LifeTown and in the community.
13
It’s not a space to seclude, it’s merely a safe training space for life skills. Athletes train in gyms, doesn’t mean they don’t play in the olympics too.
17
What a wonderful reality to lead the way in showing how all members of society are valued and valuable, regardless of their various challenges. This is very inspirational and I hope it inspires other communities. Blessings to the Grossbaum's.
31
@Foxglove To show the disabled are valued, don’t hide them, take them out into tne real community.
The tears streamed down my face as I read this wonderful story. I live in California where Autism resources are few and far between. We have nothing like this! Bless you, Rabbi and Mrs. Grossbaum, bless you!
46