Susan's Blog

Tuesday, October 27, 2009

How Do I Not Do It?

Sometimes people ask me, “How do you do it?” meaning that I have so much energy, blah blah. I was thinking about this today, because after I taught my class, I went straight to the State House. There I joined fellow parents of developmentally disabled adults, who were also there, as well as advocates. They were sitting vigil, which they’ve been doing on and off for weeks: first, in the Governor’s office, and now, outside of the Senate President’s office, as well as the Speaker of the House. They were on the floor, or hanging around the closed doors. They said that what they were told is that people could go in to see the Senate President Therese Murray “two at a time,” and that the others just had to wait.

So there we all were, pissed off tired parents, with many mentally retarded adults. I use that word non-pejoratively, because it gets right to the heart of things, doesn’t it? You get a visual, which is what I intend. Nat is one of them, and I have no shame in saying that. The shame is on those who use the word “retard” as an insult, and emphasize the first syllable. The shame is on those who never stop to think about how if you just say, “those public programs are wasteful, therefore I don’t support them,” you are taking the easy way out. What else is there? What has the private sector done in any kind of consistent, predictable way? To rely on charity alone is to be at the whim of donations.

The shame is also on those who develop biased I.Q. tests, that ask you to stack cubes a certain way, or trip you up on categorizing. They don’t and can’t test compassion, or willingness to work, lack of guile, or eagerness to learn. They don’t test mastering activities of daily living, nor do they test how far a person has come. They don’t test those who have learned to control their eccentric behaviors, or their aggression.

And the shame is on our leaders. Our legislators, our Governor, who promised so many wonderful things and are not delivering. They are letting our most vulnerable simply go home, if they are even lucky enough to have one. Even Nat, with all of his skills, does so little at home, when compared to his group home.

And perhaps the shame is on all of us, for sending the message that we don’t want any new taxes, when there is no other way to pay for these services.

It’s as simple as this: if you cut services for disabled adults, they have no services. If I must say this, then I will say this. It is not the same as cutting funding for libraries, for roads, for zoos. Even for schools. There is nothing like there is when they are school-age, where they are entitled to go to school. There will always be schools to educate people, in one way or another. But there will not be group homes. There will be no day programs, no way to work. There will be nothing but parents like me, or not like me. Elderly. Fixed income. Working class. Jobless. Ill. Mentally ill.

If you cut the Department of Developmental Services, formerly the Department of Mental Retardation, or if you cut the Department of Mental Health, you cut the services. There will be no services for thousands of people like Nat.

I went into the Senate President’s office and I demanded that she come out, even for a minute, and meet all of these people I said it was an outrage that no one was talking to them. Some of them were even her constituents!!!

I heard that later on, she did come out. Not an aide. The Senate President came out. I am grateful to her for that. Now I hope she and the rest of them will come through.

How do I do it? How do I not do it? I do it because it makes me so angry. We should all be.


The sad fact is–they don't care. Our kids mean nothing to these people.

— added by Anonymous on Tuesday, October 27, 2009 at 3:28 pm

Are the kids or their parents donating the same amount of money to their campaigns are the corporations are?

Did not think so.

— added by Someone Said on Tuesday, October 27, 2009 at 3:44 pm

You guys are so cynical. I refuse to believe that. I think they just need to see that this is front-burner stuff. They have a lot of things distracting them and so we've all got to be the loudest distraction!

— added by Susan Senator on Tuesday, October 27, 2009 at 4:09 pm

I'm glad you went and grateful for the support and advocacy work you do for Nat. Why? Because from where I stand you are supporting all of us, Susan. Happy to hear that after it all, the senate pres did come out to see the constituency.

— added by Patrick on Tuesday, October 27, 2009 at 6:31 pm

Thank you.. It's all true.

— added by Judith U. on Tuesday, October 27, 2009 at 6:51 pm

People ask me that all the time. I "do it" because I love my kids, and tell them they would do the same for their kids. What really frosts my behind are people who REFUSE to accept even the most cogent arguments for health care reform, and spew b.s. about "private sector" this and "personal responsibility" that. Well, you can yammer all day long about that crap, but the truth is that people can and do fall through the cracks, and there needs to be SOMETHING provided by the government. God bless you and your fellow parents for advocating for our kids. SOMEbody needs to.

Ugh. Sorry to rant on your blog, bad day arguing with family members who need lessons in compassion and basic human decency.

— added by ASDmomNC on Tuesday, October 27, 2009 at 8:06 pm

Well said, (as usual) Susan. We do need to be screaming at the tops of our lungs, for the sake of those who can't. Thank You for spreading the word!

— added by Cyndi on Tuesday, October 27, 2009 at 9:08 pm

Add me to the cynical group. After this budget year we've had in our state (NC) I've been really bitter. All of our organizations for MH/DD/SA banded together, told the legislators that we would support them if they needed to raise our taxes. So they did parade our poor helpless children out to say "we need to raise taxes for these poor souls blah blah blah" then they raised taxes (not income taxes) and made the biggest cut to social services.
It's infuriating. People will die because of these funding cuts. The organizations that have been the most helpful and useful to my family/child actually ARE private or nonprofits like ARC. The govt hasn't done ONE thing for my child. Not one and he's 5yo and severe. The 0-3 program blew us off. The school district causes us more trouble than it's worth to put him in their holding pen. (early intervention?) Sure I could fight them, but I have a nonverbal autistic 5 year old who I'm trying to educate and care for- I don't have the time or energy to be out there fighting losing battles. We can only do each day at a time.

— added by Anonymous on Wednesday, October 28, 2009 at 3:40 am

You screwed up by not learning how to cure your kid and now you want the taxpayers to cover your mistake. You're fighting the wrong battle.

Why won't you fight the politicians to give these kids the newest medical advances that give them back their brains?

All they will ever do is warehouse your son and allow him to die young.

— added by Foresam on Wednesday, October 28, 2009 at 7:45 am

I agree with the last Anonymous. California has no money left either for autistic adults. What will happen to them? And who has this kind of time? Sorry but I literally spend days and nights dealing with my child. Your child is in residential and you clearly have many free days and a lot of free time to go sit in people's offices. Many parents don't have the time or the energy.

— added by Anonymous on Wednesday, October 28, 2009 at 8:49 am

It is beyond horrible to hear about the situations in the other states, such as CA and NC. This is clearly a major fight that we will all have to wage, together, without slinging mud. Standing together we have a far better chance than fighting among ourselves.

— added by Susan Senator on Wednesday, October 28, 2009 at 12:09 pm

When I read some of the obnoxious posts that occasionally appear here, I always wonder how people can be so intentionally cruel, or so oblivious to the impact of their words. I'm not sure which is worse. Are adult reflection and self-restraint to much to ask?

— added by NESCA, p.c. on Wednesday, October 28, 2009 at 12:30 pm

I support you 100%. Any parent who takes action on behalf of their child is a hero. For people who say we can't make a difference, I have a favorite quote from RFK:

Few are willing to brave the disapproval of their fellows, the censure of the colleagues, the wrath of their society. Moral courage is a rarer commodity than bravery in battle or great intelligence. Yet it is the one essential, vital quality for those who seek to change a world that yields most painfully to change. Each time a person stands up for an idea, or acts to improve the lot of others, or strikes out against injustice, he sends forth a tiny ripple of hope, and crossing each other from a million different centers of energy and daring, those ripples build a current that can sweep down the mightiest walls of oppression and resistance.

— Robert F. Kennedy

It's how ANY big social change has been made: women's suffrage, civil rights, the election of our country's first black president. And it's how we make a difference for our kids.

For as long as it takes us to sit in their office … Great work, sister!

— added by Brenda on Wednesday, October 28, 2009 at 3:30 pm

It is sad to see parents shun the biomedical route, continue to vaccinate and ultimately have the worry of a lifetime as to what will happen to their children. When will parents wake up and realize that the vaccine issue is real.

— added by Anonymous on Thursday, October 29, 2009 at 8:19 am

Susan, thank you for going to the statehouse vigil and for taking the time to write about it. Your advocacy and the advocacy of all the others who have been participating in the vigil is so apprecaited by those of us who could not attend. Thank you!

"When you get to the end of your rope, tie a knot and hang on" -Franklin D. Roosevelt

— added by Anonymous on Thursday, October 29, 2009 at 12:30 pm

Thanks, Susan, for going on behalf of your son and my daughter and all of the other young adults, older adults – living with a disability and need these programs to survive – not even thrive – just survive. I would have been there, too, if I could have been, but my work is not flexible. I am thankful for those that could and did go. The word mentally retarded doesn't bother me, it is a hard word that I have learned to live with. The fact that these programs are not an entitlement – a right – in a progressive state like MA bothers me a whole lot more than the term mentally retarded. If our states can mandate schools and even funds to prisons – why can't the lawmakers see to take these programs off of the list of things to be "clipped" when the budget dips, which it does every so often??

— added by Mary Ellen on Thursday, October 29, 2009 at 7:42 pm

I am the anon commenter from NC with the 5 year old. I am saddened by the mean-spirited comments on this post. Susan, I didn't mean to sound discouraging to you doing this essential advocacy work. I drove myself crazy advocating while our legislature was in session, pretty much at the expense of my sanity and my children's well-being! That made it all the more disappointing when they made such a huge cut to social services for the most vulnerable citizens. Still, we need to be out there, because as I see it: autism is a national emergency. Maybe it's just my area but my n'hood is teeming with small children with autism. They can't support the DD adults right now? Bahahaha. They haven't seen anything yet.

To the commenters promoting biomed: Get off your high horse. We are doing biomed interventions with our son and they are having a positive impact but he is permanently brain damaged from his documented vaccine injury. We are moving him toward recovery but as he is 5 and not speaking, I highly doubt he'll ever be living independently. (ps. you smell very troll-ish to me)

— added by Anonymous on Thursday, October 29, 2009 at 9:11 pm

The thing is, this has nothing to do with "trying biomed." I'm not opposed to The World of Biomed. I've tried a few biomed approaches for Nat, for the record; of course I have. He does not have that kind of autism.

But all of that is beside the point. This post is about advocacy in terms of the government. This is another venue to try in terms of improving our children's lives. It is not for everyone — as one anonymous commenter pointed out, some parents do not find they can leave at all at this point. I understand that and I hope that one day things will be different. I remember being in that boat, too.

— added by Susan Senator on Friday, October 30, 2009 at 5:12 am

You tried "some biomed" but claim "he doesn't have that kind of autism." Clearly you don't understand biomed.

— added by Anonymous on Saturday, November 14, 2009 at 1:23 pm

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