Ableism Kills

In case you don’t know what ableism is, it’s discrimination against people with disabilities. Whether it is intentional or not. It can look like typical discrimination expression  like hate for people with disabilities and rejection of disabled applicants for housing and jobs. Or it can look more complicated like the denial of accessibility, institutionalized discrimination in the form of benefits systems designed to keep people with disabilities in poverty, etc.

Take this video for example, ablesim due to the denial of accessibility:

Ableism can also be the belief that people with disabilities need to be fixed or healed, and cannot fully function as members of our society. These assumptions make some members our society view people with disabilities as being abnormal and part of a distant other instead of minorities within our same society.  I realize that abelism can be deliberate or accidental but that still does not make it okay.  I found this twitter post when I was researching this topic and I think it perfectly explains ableism.

Ableism

Not too long ago a man in Japan acted on his ableist ideology and committed Japan’s worst mass murder. A man who claimed he wanted to kill disabled people left at least 19 dead and 26 others injured after a knife attack at a care facility in Japan. A mercy killing.

 It was the country’s worst mass killing in decades. “I did it,” the 26-year-old former employee of the facility was quoted as saying. “It is better that disabled people disappear,” he was said to have added. He was carrying a bag full of knives and other sharp-edged tools, some of which were bloodstained, when he handed himself in. Nine women and 10 men were killed. They ranged in age from 18 to 70.

He tied up staff members and asked them where people with severe impairments were accommodated in the facility, investigative sources said. Shortly after his arrest, Uematsu allegedly told police that he wanted to “save” those with multiple disabilities and felt “no remorse” for what he did. He reportedly told others before the rampage that “disabled people create misfortune” and that he “wanted to euthanize them.”

Masayuki Okahara, professor of sociology at Keio University, said, “I cannot accept the defendant’s claims. But against the background of the case may be society’s intolerance toward its most vulnerable members. “There is a general sense that we should not discuss the incident. Society has accepted disabled people only in the context of heartwarming stories,” he said.

“But we should first understand the reality of seriously impaired people. We should create an environment in which such people and their families can feel acceptance and freely go out in society.”  Japan Times

If you can, read this blog post: “I don’t see myself without my disability” It’s a good read about acceptance of disability. The closes the post with this:  “When we dream about a better more inclusive reality, we shouldn’t show the status quo and suggest that people who don’t usually fit in should have that too. We should show a world where they actually do.”

We should be providing supports and encouragement to people with disabilities to help them live the life they want. We should not push them and their dreams aside or try to erase their disability.

Abelism kills. It kills dreams, opportunities, acceptance and many times it can literally kill people.

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I’m Sorry

This picture was taken in Leakey, Texas this past Thanksgiving. Joel struggled so hard to get up there and I think I’ve mentioned this before but he really has some balance issues. We all had to push him up because he was determined to get there. I love my boy! Any who….

Some times, people think the appropriate response when I tell them my brother has down syndrome is, “Oh, I’m sorry.”

Why?

I remember one of the first times that happened to me and I responded in a civil way and said that it was completely okay, there’s nothing to be sorry about. And this person said, “No, no. We don’t need to talk about it.”  Alright… Whatever man.

So let me tell you about my boyfriend, Huy. He met Joel right away back when we were in high school and we did a lot of volunteering with Key Club. I would always bring my brother along to events and everyone knew him. So Huy knew when we started dating that Joel had Down syndrome and he never really talked about it, but he always played with him and treated him great. So when he told his sister about us and about Joel, they were very sympathetic about Joel. Because ya know.. apparently it is a very sad thing to have a family member with Down syndrome. They asked him how long Joel has to live. Huy did not tell me about this conversation until months later. He was scared to bring it up or something because he did not realize that people with Down syndrome have a lower life expectancy. (They don’t anymore, he just thought that because what his sisters said) I can’t remember how he finally told me about the conversation but by that time he was not as ignorant about Down syndrome anymore and he told me the story as in a, “can you believe it” kinda way. I think I got a little offended at first but I can’t be mad that they didn’t know. But it was also funny to me because I knew he knew better at the time he told me. I’m glad he is not ignorant about it anymore, his relationship with Joel makes me one happy camper.

DISCLAIMER: His family is great and they have never said anything rude or inappropriate about Joel. They are loving and so nice to us. Often times I’m very jealous that I don’t see them as much. Y’all have no idea how much I like his family. So just know I’m not trying to make them look bad, I’m just sharing my life as always. 

My most recent encounter with the response of I’m sorry was at a restaurant. At the table was my sister, me, Joel, and our friend. So we all look ethnic and different from each other so the hostess for some reason wanted to guess all of our ethnicities. (in her defense, she was also Hispanic, and Hispanics always try to guess what country everyone is from.) Weird from the start. When she got to Joel she said, “Umm, I don’t know, you’re confusing. Maybe Asian.” All I said was, “No he has Down syndrome.” She got very awkward and said she so sorry and she did not come back to our table I believe, if she did I probably would have ignored her honestly. I remember being really mad about the hostess. I was really negative about it and rude. Which is probably not the best way to handle a situation like like. It was just weird thing for her to do in the first place.

People with Down syndrome aren’t sick and they do not have diseases. They can most definitely without life their parents nowadays. In past things were different and their life expectancy was in the 30’s I believe but most people believe it is because for the most part they were put in institutions and weren’t cared for as much, therefore prone to more sicknesses and what not. Luckily this is no longer the case. Although there are exceptions, like those who have other ailments along with Down syndrome. But Down syndrome alone is not a cause of death. DS Facts

A lot of people aren’t exposed to disabilities and therefore do not know how to react or what to say. I get it. It’s okay, we can use these types of situations as a learning experience. I guess some people are sorry because they think caring for someone with a disability is hard. Which sometimes it is. But I’m not sorry about my life, Joel isn’t sorry about his life and I know lots of families who aren’t sorry about their lives.

 

How my “Culture” Accepts Disability

I struggled with writing this but it’s something I want to get off my chest. I have written about it in a small capacity in other posts but I think it’s time to dedicate a whole post on the subject.

I want to share a story about what someone said that happened at church of all places. I’m going to call this person Squidward. Squidward was on stage talking about the bravery of a man in our congregation because of he has a daughter with a disability. The way he described this girl was so inappropriate and disgusting. He repeatedly said she was all twisted up and looked like a monster. He actually said the word monster more than once. It was so hard for me to even type that sentence. Squidward felt good about himself for bragging about the bravery of this man. so he’s brave for loving and caring for his daughter? I get that some people are horrible and leave when they have disabled child. But why praise and call someone brave for doing what any father should. It’s like someone calling me brave for taking care of my brother. I don’t get it. He would not have called him brave if it were a typical family.

Let’s go back to him calling this girl a monster. WHAT?!?  How did he think that was okay? First of all, she is not all twisted up and deformed. She does have motor skills complications among other things but his description was wrong. But this a common thing for Hispanic people in my experience. Not all Hispanics or just not everyone in general knows how to speak about disability. The number of times I have heard the word deformed when it shouldn’t used is ridiculous.  When a family member, we’ll call Mike Wazowski, of mines came to visit from the motherland (El Salvador) a couple of years ago, Mike Wazowski, took one look at Joel and said. “God is good, he is not as deformed as before.” When was he ever deformed!?! Mike Wazowski! When?!? Because I never knew he had deformities…

(I do not mean this as an insult to anyone who does have deformities, it’s very common. I just mean that if someone doesn’t have a deformity, then why say that they do?) If you do not understand the disability that someone has, I think most would prefer you ask rather than just assume and say something completely wrong.

I know I’ve mentioned instances where family members refer to Joel as “pobrecito” meaning poor thing. I hate that. I shared about when I finally told my aunt and mom not to refer to people as pobrecito and they just made fun of me for saying that not to mention how rude of me it was to correct them. A situation recently occurred where my mom used that word when we were driving and saw a someone trip. We both laughed because who doesn’t like a good random fall. Well she called the guy pobrecito then said, ” yeah yeah, I know don’t say that.” I had to explain to her again that I just meant that I didn’t like her calling people with disabilities poor thing just because they have a disability. She then acted like this was the biggest revelation of her life and said that I should have been explained that to her. Okay mom. Okay.

Just like in any culture, not everyone is the same. There are many hispanics (and people in general) that are amazing with Joel and I appreciate y’all!

Also, I feel like I need to add that my mom is great with Joel and loves him dearly. She cares for him with a lot of patience and attentiveness. There’s just things that she says/does because of the way she grew up that I don’t agree with. And I’m sure she doesn’t agree with everything I say and do. Oh well!

 

 

Baby Talk

Side note about the picture: Joel is a huge who fan, here he is having the time of his life at comic con in NOLA.

Joel is almost 18 years old, and in many ways he acts his age. But of course, he is childlike in some ways, however this does not give anyone to talk to him like he’s a baby. It’s one of my greatest pet peeves. It’s so demeaning and it just makes me so angry.

Not too many people do it, but when I notice it I just can’t help but look at you in disgust. The sad part is, most people who do it are older family members of ours. This means I can’t really say anything to them without being disrespectful.  I mean technically I can but it won’t pretty, and they won’t let me forget it. My family/culture is different from the average American family. I remember one time I told my mom and my aunt to stop saying “pobrecito” when referring to Joel.  (Pobrecito= poor thing) Now they bring it up all the time, my mom does so way more. When they catch themselves saying it they’ll look at me (sometimes in disgust and sometimes laughing) and say Raquel doesn’t like that. They missed my reasoning and just focused on me telling them what not to do. At least it got them thinking about it?? But you get my point, I can’t really correct these people when they do baby talk.

When one of my aunts goes to tell Joel hi, a lot of the time she’ll bend down and squeeze his cheeks and do the baby talk. Joel for the most part doesn’t react and sits still, sometimes he’ll be rude and say “stupid,” luckily she doesn’t understand him. After doing this, my aunt will usually look at me with a smile as if I should be pleased with her interaction with Joel. I will not smile back lady, your interaction is demeaning. I think this is why Joel is kind of mean to my aunts when they come over. You can hear him say “Oh no, not again” when he sees them coming in. It’s so funny to my sister and I and luckily I don’t think most of my family understands him when he says it.

Joel deserves to be spoken to normally, please no baby talk.

You Make Me Brave

IMG_3197A couple of weeks ago we went to the beach for the day. If you don’t know Joel, he LOVES the water. It’s so hard to get him out once he’s in. He’ll yell and hit and push us when we try to get him out. Usually after some struggling, we can get him out. Luckily he usually stays close to the shore, but this time he was more gutsy.

My dad joined us this time for the trip and took joel further out with him. No problem with that until we got out of the water for some snacks and my dad never got back in. Joel was thinking hey, my dad let me go far so I can do it again. By the way, my mom and I are very short and not very good swimmers… we couldnt go as far as my dad did. And I have a huge fear of deep water. If my feet can’t touch the ground I panic.

For some reason, he didn’t go that far until we were trying to leave. I was tying to hold his hand and pull him in, and he’d resist and get further away. My feet couldn’t feel the sand and I was so nervous that he’d get way too far me. I could see him struggle and get scared when the waves would get too high and I saw him inhale water. But the more I tried to pull him in, the more he put up a fight.

There was a man right next to us who refused to help by the way! Ugh!!! Anyways, my mom came to help but she’s just as week and nervous as me. But slowly somehow we got him close to shore. There Joel decided to push me and yell at me and cause a scene. My dad finally showed up and showed Joel his laser tag card and he yell “yay!” And got out… that’s all it took.

Fast forward a couple of weeks to now, I am currently in Guatemala serving in an orphanage with an awesome group. We got together one night for an amazing bonfire worship. One of the songs that we sang was You Make Me Brave. I always loved this song but that night God used it for more than just a good song. I was getting all kinds of emotional throughout the night but while I was talking to a few people afterwards, I began to see the ways God makes me brave in situations like this that I didn’t really think about. I’m scared of deep water but I remained by Joel’s side because God gives me the bravery I need to be there for him in situations where I probably couldn’t do the same for myself or others.

As a result, Joel has an ear infection because of the all the water that got in. He also may not be going to the beach anytime soon.  My poor baby…

Jokes

People are always trying to be funny and sometimes they end up being rude… or just stupid. I’m not referring to bad jokes, I am referring to jokes about special needs/ disabilities. It used to happen a lot when I was in school, which is expected because ya know, dumb teens. But it always hits me hard when it happens now, as an adult coming from other adults.

I don’t know what’s worse… Seeing someone catch themselves making that joke in front of me, them making the joke at all, or seeing them not care about making the joke. It’s all a frustrating experience for me.  I’ll share two sort of recent experiences, both from people I love dearly:

Church:

So this one happened after a Sunday service and a group of us were sitting together at a table talking.  I’ll refer to the person who made the disability joke as  Professor X. I do not remember exactly what was said but someone at the table said something and either mixed up their words or was teasing someone who did. Professor X then rolled his/her eyes, waved his/her arm back and forth by his/her chest and babbled. Then Professor X looked at me with wide eyes and said, “Oh no, I’m sorry I didn’t mean it like it that.”

What I should have said: Then how did you mean it? So, suddenly, it’s not funny because of my brother? Was it funny to you before? Why make the joke? Look, it’s okay. Just please don’t make those jokes regardless if I’m around or not. — Any of that might have been acceptable.

What I said instead: Nothing. I smiled at Professor X and walked away.

Tutti Frutti:

So this one took place at a frozen yogurt shop called Tutti Frutti. I’ll refer this person as Magneto. It was a group of us that had taken several cars. One of the people I was with parked in handicap spot. Actually they parked sideways taking two handicap spots. Now my brother can walk, my issue was not directly related to my brother, my issue was that it was a rude thing to do. So when Magneto got inside I said ask why he/she did that and that it was not cool. Magneto’s response still boils my blood. Magneto said, “But I am handicapped.” With a big ol’ smile like he’she just said the funniest thing and then did the exact same thing that Professor X did in my previous scenario. ^^

I was bolder this time, I didn’t smile. I told Magento to stop laughing, it’s not funny. Magento said, “Oh.” That’s it. Magneto didn’t apologize and that’s okay, but at least I said something.

There have been countless other times. Some that have nothing to do with Joel or his disability; like a whole group of people making fun of sign language, pretending to limp, or pretending to have any disability. It all makes me cringe and makes me what to slap them give them a lesson on decency. They should know better. Education is important people. Don’t be ignorant, don’t make these jokes.

P.S: Same goes for using the word retarded. Just don’t.

Thank God Joel has Down Syndrome

So my family hosts a home group every Friday in which some people from church come over and study the bible to together and what not. Usually at the end of each night, people tell the group if they have a prayer requested or they have something to share.

On last Friday a lady had something we wanted to share. Apparently she had asked the group if they would join her in prayer for a pregnant friend who was told by doctors that her baby might have down syndrome and they wanted to run more test. — That’s understandable. But what she wanted to share was that God is so good because it turns out that the baby doesn’t have down syndrome. Apparently the doctor made a mistake, but thank God the baby is okay. Okay? So a baby with down syndrome is not okay?

I immediately looked at my parents when she said this but they seemed to not be bothered by it. But I was so shocked that she said that. She knows she is in the home of someone with down syndrome. She spoke her words with such confidence and pride that God had answered her prayer. That was so merciful because he didn’t give that baby down syndrome. So, what does she think of my family? Does she think it’s a curse or a punishment? Should we be grieving that Joel has down syndrome? Should we not be grateful to God that Joel has down syndrome?

My parents reaction left me a little upset at them.  How did they not say something? How did they just look at her and nod? I was going to say something, and maybe I should’ve, but I didn’t. I don’t know if my parent felt what I did, I feel like they should have, but who am I say this? I did mention the situation to my mom the next day and all she said was yeah, this lady doesn’t know. That’s it. I don’t know what I expected. I’m not trying to make my parents look bad. They just have different views, grew up in a different time and in a different country. I know they love Joel and protect him, and I know I am not a parent, but I felt strongly about this and I felt they should have too.

All I will say now is I Thank God Joel has down syndrome. I know it may not be something people ask for but I am happy God gave us Joel. I know all of our lives would be completely different if he didn’t have down syndrome. I am grateful that he was created this way. No pity, no prayer requests on changing this, no.

Respect

The way we speak says a lot, whether we realize it or not. Especially when we speak to people with disabilities. It is important that we are aware of our terminology and manner of speaking. There is power in our language and in what we put labels on.

The first thing we need to understand is that people with disabilities are not suffering from a tragedy, struggling to become normal, victims, nor are they retarded. To most people, their diagnosis is not their most important characteristic. (to others, it is the most important) We normally do not go around introducing ourselves as, “Hello, I’m diabetic Jane.” So why would we do the same to a person with any kind of disability. They are people first, not their diagnosis. Right? Or maybe this is not always the case…

From watching Born This Way and reading other blogs and articles, I realized something. What I wrote in the ^ above paragraph, it does not apply to everyone. Many people wear their disability or condition with pride. Something John from Born This Way says a lot is “I am down syndrome.” Now, I do not know if he knows the power in that statement, but I do and I know many others do as well. To me, it means that he recognizes that down syndrome is part of who he is, it is not just a diagnosis.

So, where do I stand with the whole people first language thing? I think that whole movement (campaign?) is great. Personally, I use people first language professionally and most of the time generally. But I also think that some people with disabilities don’t care and others purposely want to identify with their disability first. It is a personal decision and who are we to correct someone who chooses one over the other. There have been many times I would see a post from a parent and they would not use people first language and a lot of the comments are correcting this parent. It think it’s crazy to correct someone based on whether or not they use people first language. Like I said, it is a personal decision.  Now some people use it in a hurtful or demeaning way, that is not who I am defending!

There have been many times that I have heard someone say, “poor thing”, “how sad”, or even “it makes me feel so sorry” referring to Joel. I get that since he has down syndrome, you can see he has a disability just by looking at him. So just by his disability being visible, we get a lot of looks and phrases like the ones I just mentioned. I know they may say this with good intentions or maybe even out ignorance; they are not trying to be rude but things like that are not acceptable to say. My brother lives a very happy and productive life, and nothing about that is sad. He may be different and require more patience but its not sad.

When speaking to people with disabilities, it is important to remember that they deserve to be treated as an equal. Speak to them first, as opposed to speaking to whoever they are with, it is important to acknowledge them. Give them eye contact and make sure that you give them time to listen, process, and respond. If they are having trouble understanding, please be patient with them.

I know that for me it can be frustrating to constantly repeat myself, but I try not to let that show. Joel is not oblivious to the difference in my tone when I speak, so I need to be mindful of the tones I use and the reactions I give after they respond. In my Joel’s case, unfortunately, I can lose my patience. The more I have to repeat myself, the louder I can get. He notices when this happens and constantly apologizes. Once he starts apologizing I feel terrible and explain to him that he did nothing wrong and he should not apologize.

Another important thing I need remember is to use appropriate language that Joel or other people with disabilities I come across will understand; don’t use jargon, difficult words, or figure of speeches. This is not true for everyone but for most people with cognitive disabilities I think it is. It is also important to understand that sometimes it takes time for them to trust others, so do not take hesitance or silence personal. Everyone is different and not everyone will react the same way and they are not all on the same level. Some know and understand more, so not everything I mentioned on this post applies. The difficulties of one is not the same for all. The important thing to take away from this is RESPECT.

FHF’s Version

Comparing

BEHOLD: Joel in all his glory posing in front of the Waterwall in Houston in the spring of 2015. I like this picture of Joel because he’s doing one of his favorite things, posing. I do not know what kind of pose he thinks he’s doing but he thought it was hilarious.

Growing up, we did not interact or spend a lot of time with other people with disabilities.  (In fact, I didn’t even know Joel had a disability until I was like 8ish… I’ll explain that in another post) This was not because we tried not too, but because my family doesn’t tend to go out look for the opportunity to do so. Part of it could be cultural and the language barrier, but I as I got older I wanted to change that. Up until about 4 years ago (Joel’s first time going to Lions Camp) his only interaction with other people with disabilities was through school and the occasional bump in at the mall or something.

When I started working at my current job, Families Helping Families ( which is our state’s PTI) I learned about so many more opportunity for Joel and I tried to get him involved in as many things as possible. Like Miracle League, Special Olympics, Crossfit, other camps, dances, and all kinds of other random activities and events. So he now does sports basically year round and he loves it. But there are few things that I noticed: parent cliques and the difference between Joel and the rest of kids. (Kids?? other people with disabilities? participants? you know what I mean.)

So without further ado… Comparing:

I was sort of ignorant when it came to down syndrome, I knew the basics, the things they teach you in school about it, and would see an occasion random story on my Facebook feed about someone with down syndrome. But overall my view of down syndrome was limited to what my experiences with Joel were.

With that said, let me tell you about Joel and how I compare him to the others:

He is kind of mean to us most of the time when he’s playing sports, like he gets mad when he watch him too much, doesn’t respond well to our cheers, kisses, thumbs up, and waves, and doesn’t want to be near us unless it is time to go. And I would compare this the way most of the other kids interacted with their families. A lot of them were loving and blew kisses and loved the praise and attention from their families. Basically the opposite of Joel. Now, it’s not as bad as it sounds. He glances over to us during the game to make sure we’re watching. He’ll tell us he had fun, smile, and sometimes even hold our hand when the game is over. But it is still different from the way most of the other kids show there affection and I got jealous at first.  I have come to the conclusion that this may be all the affection we will get from him, at least during sports, and that’s okay. And to be fair, he doesn’t always get mad at us and at home he is much more affectionate.

Joel is also mostly nonverbal. He tries his best to communicate and but he can only say a handful of words. Somethings you can only understand if you spend enough time with him. And once a gain I would compare this to the other kids, specifically the other kids with down syndrome. They all talk. Some talk way more than others but I haven’t met a single one who has speech as bad as Joel. This made me very jealous, and I know I shouldn’t be. Everyone learns and grows at their own pace regardless of whether or not they have a disability. I have seen his speech improve, in the past couple years but it is still pretty behind most of the other people with down syndrome that I have met. Even the younger ones. It used to bother me, and to be honest it still makes me jealous at times. But I am coming to terms with where Joel is. If I keep comparing Joel to others, I won’t be grateful for where he is. And I am grateful for where he is. I am so proud of him, he has come a long way and has more to learn. Even if he doesn’t improve his speech, it’ll be enough for me.

The Cliques: I’ll write about this later on.

 

 

Joel’s First “Job”

While I was in college I worked at our neighborhood Baskin Robbins. Joel would come in all the time (once he disappeared from home because of Baskin Robbins, but that’s a different story for another day.) He loved that place and still does but we have to limit his visits now for health reasons. Many times when my family would come in while I was working Joel would refuse to leave. There were several occasions that our parents left him there while I was working because they could not get him out of the store. Luckily, the owner was very cool about it every time and also said Joel could stay as long as he wants. We did not think much of it other than thinking he was being rebellious towards our parents.

Joel can be very hard-headed at times,  just like any other teenage boy. He listens when he wants too and has a hard time being obedient.  BUT! This is only the case with us, when he’s at school, camp, or with other people who are not in his immediate family, he is such an angel. To be fair, his behavior has gotten better, but at the time this story is taking place he was still being difficult, but mostly just to our parents.

So, it was one of those days that Joel was refusing to go home and hiding behind the counter so our mom would give up trying to take him out. But this time was a little different instead of chilling in the back and playing games on his IPod, he stayed by the counter and said the word, work. (a little side note here: at this time I had also started working at our state’s PTI and I was beginning to learn a lot about disability and employment and all that good stuff) So, this put ideas in my head and I wondered if maybe Joel was ready to work. I called the owner and asked if it was okay to let Joel work with me, thankfully he was super supportive and said he could also take a share of the tips too.

So I gave him my Baskin-Robbins hat and he became the happiest kid ever. He did everything I told him to like a good employee. He helped me make cones, wash dishes, restock the supplies, and hand customers their order.

Most people were very nice and started conversations with us about disability and how cool it was to see him there. But there’s always a bad apple. One lady, although she never said anything, was bothered by him. She kept giving him a look and she didn’t want to take her cone from his hands. This caused Joel to drop the cone and he got upset and went to sit in the back. Still the lady never said anything, I fixed her order and she left. I was the kind of employee that never took crap like that from customers, but this time I kept my cool and went to tell Joel it was okay and we would try again later. He was trying to explain himself to me but he’s speech is very hard to understand, but he was able to pull himself together and went back to work. Later that night he called my dad to come get him when he was tired. He went home feeling accomplished and with some tip money.

He continued to pop in to work with me whenever he wanted until I stopped working there. I am very grateful that we know such an open minded person such as Ramzy, the owner of our Baskin Robbins,  that allowed Joel, who can’t speak and only works when he feels like it, to come in whenever he wants for as long as he wants. What kind of employer does that? It’s truly amazing and encouraging to know there are people like this out there. You’ll never know what opportunities are out there until to open up and ask.

Here’s the same story but written for my job: FHF’s Version