Posts Tagged ‘autism’

Rewarding AND Fun

April 4, 2009

I was going to wait until I start my autism blog for this, but this is as good a place as any for me to address something here – and it is about a misconception about what I do for a living.  I provide therapeutic services to children and adults with autism in the areas of sports and exercise, social skills, and academics.  It’s not that people always misunderstand what I do, but they often have some preconceived notions about it. 

The reactions I get are sometimes very positive – some people really appreciate what I do and find it very interesting.  For every time that I have received that reaction, though, there have been many times that people have had reactions that fall into one of the categories below.  Surprisingly, it’s often women who have these reactions – sometimes on a first date or upon an initial conversation that starts with “What do you do?” Then after I answer, the follow up response is something like: 

“Oh, that must be so hard.”  They say this with a really pained expression on their face.  (Remember those commercials a few years ago – the Bitter Beer Face?)  They say it as if to say, “Wow, I would never be able to do that, and I would never want to do that.  How unfun and boring.”  Their body language gives away the fact that the last thing they would want to do is work with kids on the autism spectrum.  I try to explain that it is hard sometimes but it’s also a lot of fun. 

Kids with autism are like neurotypical kids except that they have different skills and abilities.  They are just more extreme.  To put it simply, if you don’t like children with autism, then you don’t like children.  And I’m surprised at the number of women in the Washington area who don’t like children.  Your job, whether it is being a lawyer, a pharmaceutical sales representative, or a consultant, would be unfun and boring to me.  While you’re watching the clock, I’m in the flow and time is flying.  So have fun with your spreadsheet. 

(I don’t mean to imply that career oriented women aren’t good with children.  You don’t have to be a teacher, a pediatric nurse, or a volunteer to be good with kids.  And people need to make money, and careers should be important.  But if you think that your career is more important than anything else, and you don’t value the idea of having any experience with kids, that’s a little extreme.)

There is also an attitude that people have about children and adults with disabilities that they are to be felt sorry for.  While this may be a normal initial reaction, once you get over it, you can’t feel sorry for the kids too much because if you do then you’ll spoil them and let them get away with just about anything. 

“Wow…what you do is really great.  That must be really…rewarding.”  However, they say this with a hushed tone, and look at you as if you are from another planet.  How could someone want to do something like that?” I usually follow this one up with, “Yes, but it’s also a lot of fun.”  One time, I actually had someone reply back to me, “No, you mean rewarding, but not fun.”  I responded back, “No, I mean fun. 

The tone with which they say, “That must be rewarding,” again, seems to imply, “Wow, that must be so tough.”  “Rewarding” happens when you help a charity when you don’t really want to, but you make a sacrifice in order to achieve some good.  Like serving food to the homeless.  For me, that would be boring and tedious, though certainly honorable.  What I’m doing isn’t unselfish – it’s selfish – because what I do is highly enjoyable.  

“Oh, you’re a do-gooder.”  Usually they just think this instead of say it outright, but recently someone I met said that exact sentence to me, in a condescending tone.  She followed it up with, “I work in the hotel industry.  I get people drunk for a living.”  The implication seemed to be, “Oh, you’re a goody two-shoes.  I like to party and have fun.”  Now you might say that was just being self-deprecating and was actually putting what I do on a pedestal.  But no, in this case it was condescending. I agree that partying is fun.  I did it from the time I was in college through my early 30s.  Is that not enough?  I partied with the best of them and had a lot of fun.  But you can only do so much of that. 

Playing sports is also fun.  Catching a touchdown pass in a coed football game, hitting a backhand winner in tennis, scoring a goal in soccer, or throwing a long pass in ultimate Frisbee are all fun.  

Going to a great concert is fun.  So is seeing your favorite team win a big game.  Traveling to new places is fun.  Being at a party when things are rolling is fun.  Seeing a great movie is fun.  

And teaching kids is also fun.  If you can’t appreciate teaching a child to learn to read, converse, do math, play sports for the first time, develop a sense of humor, learn to make friends, and make progress in all these areas, all the while improving behaviors, then I feel sorry for you.  If you think that working with the coolest kids in the world isn’t fun, then what kind of a parent will you be?  These kids are miracles and miracles are happening, although slowly.  

It’s like trying to explain music to someone who doesn’t get it.  If you like Bruce Springsteen’s “Born to Run,” the Eagles’ “Hotel California,” Led Zeppelin’s “Stairway to Heaven,” or any number of inspiring songs, and you try to explain that to someone and they don’t get it, then, well, they just don’t get it.  So if you don’t like kids, then you don’t like kids.  Just admit it.      

Of course, many people say these things with the best of intentions and really do admire this type of work, but many women have a high regard for men who work in more traditional roles such as lawyers or salesmen.  I’m not looking for admiration – I just don’t want someone to look at what I do as a negative.  You don’t have to love my job, but don’t hate it.  

My point is that this work is not only rewarding, but it is also fun.  In his book, “Authentic Happiness,” psychologist Martin Seligman says that using your strengths to forward knowledge, power, or goodness is great.  Doing all of that while you’re having fun is the best of both worlds.  So doing kind and fun actions creates a lot more satisfaction than doing things that are only kind, or things that are only fun.  

Or you can sit in your office and do neither.

President Obama Should Know Better

March 20, 2009

President Obama’s gaffe last night on the Tonight Show was unfortunately all too reminiscent of the federal government’s attitude toward people with disabilities.

First of all, when Obama said of his bowling, “It was like the Special Olympics or something,” it was obviously very insulting to people with intellectual or cognitive disabilities.  It’s very possible that Obama talks this way among his peers.  To not understand how offensive that statement is shows a glaring unawareness.  I’m sure there are a lot of Special Olympians who could beat Obama in bowling.

If Obama had made a racist or religious joke, the media would have been all over it.  But a joke against people with special needs?   That’s acceptable. 

I volunteered for two years as a soccer coach for the Special Olympics in Maryland, and I went to a Special Olympics event in California last year (see the two photos I took).  I started volunteering for sports programs for kids with disabilities 10 years ago, and I currently work with kids with autism (www.coachmike.net), so I know a little bit about this subject. 

Special Olympics, Long Beach, California, summer 2008

Special Olympics, Long Beach, California, summer 2008. Photo by Mike Frandsen

 

(Obama sits up there, trying to be smooth and cool.  In fact, let’s face it.  The reason that Obama got elected really isn’t any different than why every U.S. president has gotten elected in the last 40 years.  He was a better speaker than his opponents and people vote mainly on image.  Look it up – of the past 10 presidential elections, it is ALWAYS the candidate who has a better image – the one who is more friendly, possesses more charisma, and is a better public speaker.  The only possible exception was in 2000 when you could argue that Gore had a better persona than Bush [it was about even because while Gore was a much better speaker, he was more stiff and Bush was much more folksy], but many say Gore actually did win that election and he did get half a million more votes anyway. 

It’s why Obama beat Hillary – he was “cooler.”  Experience didn’t matter – funny – it always matters when I apply for a job but it doesn’t for the presidency.  I’m not saying people don’t vote for who they think will be the better president, I’m just saying that people vote for candidates who they like the most based on their personality and charisma.)

I personally believe that Obama is one of those people who is somewhat fake and unauthentic because he constantly says things and does things that are calculated to improve his image.  Not that you would expect anything other than that from a politician.

I’m not anti-Obama – I agree with Obama and the Democrats on most issues – for example, people should have a fair chance at health care – the U.S. policy on that is shameful (in fact, if I ever run for office you can look back at this statement:  “I am NOT proud of my country because of our health care situation.”  And I will never retract that statement).  And we need a clean environment to reduce the incidence of autism, breast cancer, and other disorders and diseases.

But back to the point.

There is a startling unawareness in the federal government with respect to hiring people with disabilities.  It starts at the top with the President, filters down to the cabinet members, down to the directors of the federal agencies, and down to the management and hiring personnel.  I’m not saying Obama is worse than other presidents in giving a fair chance to people with disabilities, but I’m not sure he’s any better.  See my report at http://www.coachmike.net/special_report.php.  I concluded that “The federal government’s Schedule A program intended to facilitate the hiring of people with disabilities is severely underutilized, especially in hiring people with cognitive and psychiatric disabilities.”  

Schedule A is a hiring authority set up by the government to help level the playing field and make it easier to hire people with disabilities, whether they be cognitive/intellectual (the government still uses the outdated “mental retardation” terminology), psychiatric, or physical.  (There still isn’t a developmental category to cover autism). 

The Office of Personnel Management created the Schedule A program more than 20 years ago to allow for greater recruitment and hiring of individuals with disabilities.  It allows federal agencies to bypass the competitive process to provide disabled

Special Olympics, Long Beach, California, summer 2008

Special Olympics, Long Beach, California, summer 2008.

 individuals a unique opportunity to demonstrate their ability to successfully perform the essential duties of a position with or without reasonable accommodation.  OPM states that the Schedule A certification is used to “appoint persons who are certified that they are at a severe disadvantage in obtaining employment…Certification also ensures that they are capable of functioning in the position for which they will be appointed, and that any residual disabilities are not job-related.”

In almost all cases in which the hiring authority was used, hires of people with physical disabilities outnumbered those with cognitive and psychiatric disabilities by a very wide margin.

People with disabilities have a 70% unemployment rate.  This figure only includes people who are willing and able to work and it’s still 70%. 

The only problem is that Schedule A isn’t mandatory, so it’s woefully underused except by a few agencies.  Take the National Institutes of Health as an example.  You would think this organization would be better, not worse, than other agencies at hiring people with disabilities through the Schedule A hiring authority.  In fact, I believe that the facts show that NIH discriminates against people with disabilities in their hiring process.  

From 1998 to 2008, NIH, with nearly 18,000 full-time employees, hired just four people with cognitive disabilities and one with a psychiatric disability through the Schedule A program.  I learned this information through Freedom of Information Act requests.

I first notified NIH in 2004 that they had been negligent in hiring Schedule A employees with disabilities.  I also notified them in 2005, 2006, 2007, and 2008.  Their response was almost always no response.  Each year I contacted the NIH Director, Equal Employment Office, Human Resource Officials, Selective Placement Coordinator, Institute Directors, and Ombudsman multiple times.  I have 200 pages of documents to prove it.  When I brought the subject up, several times speaking at the Interagency Autism Coordinating Committee, parents applauded but scientists and NIH leaders laughed at me. 

To this day, NIH refuses to comment on the report, and refuses to take any action to improve the situation.  After eight years at NIH (the last five as an employee), I threatened to quit in December 2006 if NIH did nothing to improve the situation.  They did nothing, I quit, and two years later NIH still hasn’t taken any action.

(This is a little off topic, but now I need a federal job again because the kidney transplant I will need soon will cost $180,000 including medications for the first year, and my insurance currently only covers 80% of it whereas the federal insurance covers 100% – see www.mikeneedsakidney.com.  But NIH is treating me like a private company would treat a whistleblower.  Instead of trying to improve the situation that I brought attention to, they are ignoring it, and holding the fact that I brought it to their attention against me.).

When I contacted Congressman Chris Van Hollen’s (D-MD) office, they promised to respond.  They ignored the issue for more than a year and then stonewalled until they thought I went away. 

You may say that it costs too much to include people with disabilities in the workforce.  But in fact, it costs too much not to do it.  You can get productivity at a relatively low price by hiring people with disabilities, and prevent them from relying on government programs like Social Security disability when possible.  (Same with health care – a little bit of preventative care goes a long way to save money in the long run).

The success or failure of any organization starts at the top.  The President’s remarks were dismissive of the abilities of people with special needs.  There is an attitude throughout the government that people with disabilities are to be ignored.  Taking action would be to admit that there is a problem, and agencies such as NIH are more concerned with their image than doing the right thing, so they would never admit that they have been deficient in hiring people with disabilities through the Schedule A hiring authority.  

The media doesn’t care either.  As I write this at 2:30 p.m., I just saw an interview on MSNBC with Chuck Todd about Obama’s appearance last night on the Tonight Show.  Todd said the show went great for Obama.  Not once in this ridiculously long interview did they bring up the President’s remarks about the Special Olympics.  The interview went so long that it delayed the Presidential Press Secretary’s press conference.  If Hillary had made those remarks, you can bet that MSNBC would be all over it. 

As for NIH, if they can’t handle hiring people with disabilities through the Schedule A program, and they were made aware of this problem five years ago, I’m sorry to say but you have to question whether they can handle other important initiatives such as stem cell research.  Don’t get me wrong – I think stem cell research is critically important to save lives and improve the quality of lives, and as much research should be done as soon as possible.  However, it would be a mistake to just throw a ton of money at the problem like the government did for the banks just because they are supposedly smarter than us. 

If there are competing organizations that can get the job done, they should be considered as well.  Either way, there should be a stringent process that funding goes to the programs that are most deserving and will be held accountable for what they do.  This process should be stringent but also expedited so that bureaucratic red tape doesn’t delay research.  You can argue that stem cell research is more important than ensuring that people with disabilities get a fair chance to contribute to the missions of government agencies.  I would say they are equally important – but they are not mutually exclusive.  The government should do both. 

This blog entry has been a little scattered, but I thought it was important to address the subject quickly.   In summary:

1.  The NIH and other federal agencies must do a better job of hiring people with disabilities using the Schedule A hiring authority.  The only way to do this is to make it or a similar program mandatory because otherwise, the government will discriminate.  

2.  President Obama (“Teflon Barry”) should set an example by hiring people with disabilities to work in the White House.  He should also give a better apology.  He should also ensure that the federal government is held accountable for giving people with disabilities a fair chance, otherwise, hiring officials and management will do the same things they have always done about this situation:  ignore it or laugh about it. 

Please see my websites:  www.coachmike.net and www.mikeneedsakidney.com.  

Finally – I reviewed this post and was going to tone it down because I thought it might be a bit harsh, but I actually decided to add to it and make it stronger.  I think Obama is a good person and a good president – we shouldn’t be afraid to criticize him, though, when he deserves it.  I’m a big Redskins fan but I’ve criticized them mercilessly for the last 15 years.  As for this and other blog posts, I try to be honest and tell it like it is.  Hopefully you appreciate it but if not, it is what it is.  


Hiring People with Disabilities – the Federal Government Needs to do Better

December 30, 2008

The federal government needs to do a better job of ensuring that people with disabilities can contribute to their missions.  The government should also revise its classifications of disabilities, and ensure that people on the autism spectrum are given fair opportunities for employment in the government.

Most federal agencies have virtually ignored the Schedule A hiring authority, a federal program used to “hire people who have a severe disadvantage in getting employment.”  Schedule A was developed by the government to help reduce the more than 70% unemployment rate of people with disabilities.  These are people who want to work and are more than capable of working.  Several years after federal agencies were made aware of their lack of action on the Schedule A issue, there has been little if any action taken.

I submitted Freedom of Information Act requests to all federal agencies asking how many times the Schedule A was used to hire people with disabilities.

According to my survey at http://www.coachmike.net/special_report.php, most federal agencies underutilized the Schedule A program or did not use it at all.  In almost all cases in which the hiring authority was used, hires of people with physical disabilities outnumbered those with cognitive and psychiatric disabilities by a very wide margin.  Here are a few examples:

  • HHS reported that it hired 213 people with disabilities through Schedule A from 2000 to 2008. 198 had physical disabilities; 15 had cognitive disabilities, and not one had a psychiatric disability.
  • The Department of the Interior, which has 75,000 employees, used the Schedule A to hire exactly three people with disabilities.
  • From 2003 to 2008 the Department of Commerce hired 36 employees with disabilities under Schedule A. All were in the physical category except for one in the psychiatric category (none were hired with cognitive disabilities). Commerce has 36,000 employees.

The government needs to be proactive in hiring people with disabilities, including those with developmental disabilities.  In the hundreds of pages of responses I received from government agencies, not once was there a mention of someone hired who had autism.

In the descriptions of disabilities listed by agencies in their responses, the term “autism” never came up, though many agencies did not go into detail.

The classification of disabilities under Schedule A excludes most people on the autism spectrum. The government lists people with disabilities in three categories. The first, “severe physical disability,” would only sometimes apply to a person with autism.

The second category, “mental retardation,” may apply to a percentage of people on the spectrum, but it is now believed by many experts that far fewer people with autism than previously believed have mental retardation.  By the way, this term still used by the government is being phased out in favor of “intellectual disability” or “cognitive disability.”

Finally, the third category, “psychiatric disability” does not cover all those with autism, which should be classified as a “developmental disability,” a term that would be much more accurate and inclusive.

The government should ensure that people with autism and other disabilities are adequately represented in federal agencies.

Please spend one minute of your time and go to www.coachmike.net, click on the special report, and look for yourselves.

You may say that it costs too much to include people with disabilities in the workforce.  But in fact, it costs too much not to do it.